VICE US - Health RSS feed for https://www.vice.com/en/section/healthhttps://www.vice.com/en%2Fsection%2Fhealth%3Flocale%3Den_usenTue, 16 Jan 2024 10:16:35 GMT<![CDATA[I'm 36 With Parkinson's and I Just Became a Dad]]>https://www.vice.com/en_us/article/n7ekaq/im-36-with-parkinsons-i-just-became-a-dadTue, 16 Jan 2024 10:16:35 GMTThis article originally appeared on VICE Netherlands.

When I think of Parkinson's, I picture shivering elderly people. I thought your hands had to be old and wrinkled before they could start shaking. Turns out it’s not the case. Although the incurable brain disorder is mainly diagnosed in people aged 50 to 60, people in their 20s and 30s can be diagnosed with Young-Onset Parkinson's Disease (YOPD).

The number of Parkinson’s patients has been on the rise, recently, partly because people are living longer than ever – but that’s not the whole story. Research by the European Food Safety Authority (EFSA) suggests that pesticides used in agriculture may also play a role by causing damage to our brains that could be linked to Parkinson's. People who drink a lot of milk, for instance, are more likely to contract the disease, as cows ingest large amounts of pesticides.

As I read these findings, I can’t help but think about all the cottage cheese I’ve been eating in my rather unsuccessful attempts to gain muscle. But according to Dr. Bart Post, neurologist and associate professor at Radboud University Medical Centre, things aren’t so straightforward. “People who are diagnosed with Parkinson's at a young age often already have a predisposition to it,” he says. “We don't quite know yet how the disease develops, although brain injury and pesticides do seem to increase the risks.”

Parkinson's is a progressive disease, which means symptoms gradually get worse. “Tremors are perhaps the most known symptom, but patients also suffer from sluggishness, constipation and weakness,” Post explains. “Your health becomes brittle, your body fragile and, eventually, a fall down the stairs or pneumonia can become fatal. If you’re diagnosed with the disease around the age of 40, your physical deterioration will be slower than if you’re older. Still, there’s a good chance you won’t live as long as someone who doesn’t have Parkinson's."

Robin Zwiers, 36, is a young Parkinson's patient. He talked to me, over Zoom from his living room, about how he’s been feeling better recently, after undergoing a treatment called Deep Brain Stimulation (DBS). During the operation, electrodes were placed in his brain to help reduce the tremors for up to ten years. “I was nervous about the surgery. Although the chances of serious side effects are small, they still tinker with your brain,” he says. “I still shiver a bit, but I’m able to do so much more, like change nappies and Zoom meetings! I feel 90 percent normal.”

It all started in 2014, when Zwiers had just graduated from uni. Complaining of wrist pain, he was referred to a physiotherapist and then a neurologist, who thought he had a non-congenital brain injury. “They probably thought I was too young to have Parkinson's,” he says. "In hindsight, it's a real shame.”

If he’d had the right diagnosis on time, he could’ve been treated earlier. He’s not bitter, though. “When a man in his late 20s complains about muscle pain, Parkinson's is simply the last thing on your mind as a doctor,” he says. To Zwiers, this just shows how little we know about it. “On TV, you always see elderly people with Parkinson’s. If doctors become more aware of people like me, they can diagnose patients more quickly."

Slowly but surely, Zwiers's symptoms got worse. His hands started shaking and his body made his life miserable. He had to stop working because he could no longer hold a computer mouse, cutlery would constantly slip out of his hands, and his face was always covered in tomato sauce when he had a slice of pizza .

portrait of a white bearded man wearing blue jeans and a dark blue hoodie, he's sitting on his couch, holding one of legs and looking at the camera. There's a big window in the background
Robin Zwiers. Photo: Chris and Marjan

Gradually, Zwiers began to realise his diagnosis didn’t match his symptoms, but was afraid of going back to the doctor to hear what was really going on. “I was running away from what felt like a death sentence,” he says. “I thought, ‘As long as I’m not diagnosed, I’m not sick.’ That was stupid, of course.”

By 2018, the shaking had became too severe to be ignored. “When the doctor uttered the words, ‘You have Parkinson's,’ I fainted,” he says. “I thought I could no longer have children, that I would have to spend my whole life in a wheelchair. I thought I was going to die.”

Doctors prescribed him 17 different pills, which helped a bit with the tremors. Zwiers could work at his computer again, but chores remained difficult. He hired a cleaner to help at home and also quit korfball, a ball game he played for years.

“I struggled with that for a long time as it was my hobby,” he says. “During this period, I applied for jobs – without success. Even though I could basically do computer work, employers dropped out when I told them about my diagnosis. They found me scary or assumed I couldn't do anything. I got frustrated and thought: ‘I’m more than my illness, why can't you see that?’ So I ended up going freelance.”

Zwiers’s personal life was sadly affected by the diagnosis, too. The tremors get worse if he gets excited or emotional, which has been a huge challenge for his love life. Sex became slower, and even giving his partner a hug started taking a lot of effort.

“It made me insecure sometimes,” he says. “I wanted her to have sex with me, not a patient. It probably didn’t always feel sexy for her to be in bed with someone shivering in his boxers,” he laughs. “Luckily, Parkinson's affects what I can do, but not who I am. I believe she loves me mainly for the latter.”

In the meantime, Zwiers has become a father. This was the main reason that motivated him to try the deep brain stimulation treatment. “I really wanted a child, always have,” he says. “I wanted to be able to play with him and cuddle him. I wanted to be an active dad, not just his conceiver. Thanks to those electrodes, my little son has a father, at least for the first part of his life.”

That being said, Zwiers knows DBS is not the solution. His symptoms will eventually return and get worse. “I know what awaits me and that scares me at times,” he says. “Just because I feel better, doesn’t mean I’m no longer sick. For now, I try not to think about it. There's no point worrying about things that can only scare you.”

]]>
n7ekaqChard van den BergAmarens EggeraatBecky BurgumChris en Marjanparkinson'sVICE NetherlandsVICE InternationalDiseasesbrain disorderbrain diseaseSexLove
<![CDATA[When Compliments Just Make You Feel... Worse]]>https://www.vice.com/en_us/article/m7bknb/online-compliments-worsen-self-esteem-studyFri, 01 Dec 2023 08:45:00 GMTI remember some compliments more than others. When I was 16, an achingly gorgeous girl told me I looked “hot” at a party. An affirming moment, right? Except, in truth, I was in the first phase of an eating disorder that would whittle down my teenage body to a dangerous point. I hoarded praise like this obsessively, as proof that what I was doing was working – even when I didn’t yet understand what that was, exactly. 

One thing I am thankful for is that all my messy teenage self-esteem stuff happened before social media. Naturally, what gets discussed most is the effect of negative comments: The big problem, the story goes, is that the internet is nasty a place of pile-ons and harassment. But what if this isn’t the only issue? What if online compliments can also make people feel bad about themselves?

“Great body!”, “You look amazing!”, “You’re so thin!” These were the kind of appearance-based comments that Nikol Kvardová and her research team at Masaryk University in the Czech Republic referenced in a recent study published in the scientific journal Body Image. They found that teenage girls often felt worse about themselves when their looks were complimented online. “It shows that viewing such comments, when combined with the portrayals of thin and muscular bodies that constantly appear on social media, may increase body dissatisfaction among adolescent girls,” Kvardová tells VICE. 

“It might come as a surprise that appearance compliments could have such adverse effects,” she says. “In fact, their role is more nuanced.” Receiving positive comments about your physical appearance may initially prompt positive feelings, but can still contribute to self-objectification, reinforce the importance of attractiveness and guide you towards unrealistic physical ideals – all of which adds up to increased dissatisfaction with your body. 

“On social media in particular,” Kvardová adds, “compliments can become problematic when coupled with unattainable appearance ideals.” While she stresses that research into online compliments and its effect on body image is in its infancy, Kvardová believes her findings could extend to other ages and genders: “We have some initial evidence from other studies that compliments could reinforce body dissatisfaction of young adult women [too].”

Clarissa is in her early thirties, and she’s certainly found her body image wobbling after being complimented online. “I removed all my social profiles a couple of years ago,” she says, “but when I used to have Instagram, I hated when someone complimented me.” 

She always used to include other people in her posts as a record of good memories, “but when someone would make a comment on my appearance, I would look at the picture differently”, Clarissa says. “I would question aspects about myself and then look at other pictures and delete a whole load of them”. 

Even though she knew people only ever meant it positively, she hated the attention. “Receiving a compliment sounds great on paper,” Clarissa explains, “but it makes you question why you got a compliment – like, did you look worse beforehand and you've made a change that is noticeable? You start to overthink everything.”

Twenty-five-year-old PR Pearl points out that sexualised compliments about people’s bodies can also feed negative feelings and reinforce damaging stereotypes. “I’ve never been skinny,” Pearl tells VICE. “I am 4'11 and even at my lowest weight I was always curvy with big boobs and a big booty. I’m also originally East African, so my body type is what the ‘BBL body’ type kind of looks like – with my body type, I am often hypersexualized and fetishized in a way that makes me very uncomfortable.”

This summer, Pearl posted a bikini pic of herself on holiday. “That led to people complimenting and commenting on the size of my boobs, how they were shaped, and a few people mentioned that I’m ‘the right kind of curvy’.” Needless to say, her chest wasn’t what Pearl was focused on when she posted the pic. “I look really happy, and I wanted to capture that moment,” she says. “It’s when the comments rolled in that I started thinking even more about my body.” 

A large part of her inner turmoil was down to how these comments were underpinned by racialised standards of appearance. “These kinds of comments reinforce the beauty ideals that people have in their heads,” Pearl says plainly. “I think people are free to compliment others, but should avoid commenting on their weight and specific body parts because… it’s just weird.”

Leila Davis (@CutieWhippingham) is a queer pole artist and founder of Blackstage, a Black queer sex worker-led company centring BIPOC pole dancers. “Social media plays a crucial role in the compliments I receive because it gives a lot of people access to me,” Davis explains. Most often, she gets compliments about being strong or fit. She doesn’t mind this – “I like being strong”, Davis says simply – but, like Pearl, she also recognises these compliments connect to more complex beauty myths around femininity and race. 

“A lot of Black women dislike compliments relating to physical strength because we have historically been seen as less 'feminine' compared to our white counterparts,” Davis tells VICE. “The assumption of 'strength' in relation to masculinity and being 'unfeeling' is not only part of a negative stereotype for Black women, but has also been used as a justification for violence against us.”

Despite their good intentions, appearance-based compliments can tie us more tightly into already-restrictive ideals around beauty, race and gender. In 2022, Davis was part of an Adidas x Stella McCartney campaign, where she had armpit hair. “Whilst I received a lot of positive compliments, I was harassed online for weeks by men across the world each time the campaign launched in different countries,” she says. 

At the same time, she also received a number of compliments from men with body hair fetishes “calling me ‘hairy goddess’ and ‘hairy queen’,” Davis recalls. “I found this very difficult and uncomfortable because I felt like the whole world was making a huge deal over something that grows on most bodies naturally”.

So, what can be done? Kvardová says the answer isn’t to abstain from complimenting completely. “Instead, we should be mindful of how compliments might affect someone’s well-being and can also be negative,” she suggests. Sravya, 27, who struggles with body dysmorphia, is a case in point. “There are certain compliments people think are helpful, but really further my body issues, while others that really have changed the way I think about myself,” she says.

When she lost weight, Sravya noticed most people praised her for “looking healthier, skinner, fitter”, making her fixate on her clothes size. But, crucially, Sravya says less appearance-based compliments like “you’re glowing” or “you look really confident” help her feel better about herself. “Compliments focused on my other attributes, personality or achievements mean so much to me,” she adds. 

Kvardová has her own ideas about the solution to the online compliment problem. “In the case of body image, social media companies ought to take responsibility and mitigate the possible harmful impacts of their platforms,” she argues, and suggests that platforms like Instagram could protective filter of adverse media content and deprioritise the importance of physical appearance in algorithms. 

But he highlights other important avenues for progress, too. “I believe that protecting youth from the potentially adverse effects of social media compliments lies predominantly in supporting media literacy and helping adolescents navigate their use of appearance-related social media,” Kvardová says. “Providing a supportive family and school environment where adolescents feel safe sharing their social media experience is immensely important.” It’s not all doom and gloom, he points out: “It’s crucial to acknowledge the positives of social media use for appearance purposes. It can provide needed support and boost self-esteem and body-positive attitudes.”

Of course, no one can know for sure which comments might make someone’s day and which might make them want to curl up in a ball and die. But, as research into body image and social media continues to mount, it seems fairly obvious that not all compliments are good and equal. So, next time you’re about to type out “nice ass” or “skinny legend”, maybe keep it in the drafts.

]]>
m7bknbEloise HendyZing Tsjengmental healthbody imageteenage girlsself esteemSocial Media
<![CDATA[Why Do I Cry When I’m Angry?]]>https://www.vice.com/en_us/article/3adx93/why-do-i-cry-when-im-angryWed, 01 Mar 2023 16:48:57 GMTHumans are the only animal species that cry emotional tears—it’s a unique and beautiful and special thing. And a lot of us wish we could cut it out, especially when it comes to angry crying.

Variations of the question “How to stop crying when angry/frustrated?” often pop up online, asked by folks who are embarrassed by the behavior. To quote a popular Quora post, “I'll be super pissed and instead it looks like I've had my feelings hurt. Hard to get someone to take you seriously in an argument if you're coming off as a big crybaby.”

I'm among the angry crybabies. I’ve been known to start difficult conversations with, “I’ll probably cry. It’s not because I’m sad.” I’ll storm away from a confrontation to hide the fact that I’m about to start sobbing. Anger and rage—and their lesser siblings, frustration and stress—make me teary, which then makes me angrier and more frustrated, and therefore tearier still… it’s a vicious circle of emotion.

The good news is that lots of people experience this: “It is very common to cry when angry,” says Sabrina Romanoff, a New York City-based clinical psychologist specializing in relationships, work and academic stress, and life transitions.

But why? Is it because we all have Cancer placements somewhere in our charts? Or is it more physical than astrological, the result of some combination of brain chemistry, physiology, and evolutionary biology? Is there anything we can do to stop tears of anger—or anything helpful that we can learn from them?

Why do we cry?

Let’s start by talkin’ tears more broadly—because as Romanoff notes, “There are emotional and physical aspects to tear production.”

Humans have several kinds of tears. Reflex tears, for example, result from external stimuli like a cold wind or fumes (or onions). Basal tears are a constant presence that lubricate and shield your cornea. Then there are emotional tears, which form in response to feelings.

Those first two types of tears are easy to explain: they protect your eyes. Emotional tears are more mysterious. One common line of thinking is that crying releases endorphins—brain chemicals that essentially make you feel better—but there's actually not a lot of scientific evidence to back that up. Instead, most modern research appears to indicate that tears are more social: They help foster human connection and promote bonding.

“How do others respond to your crying? Did they react with understanding and provide comfort and support? OK, then you feel better than before.” —Ad Vingerhoets

Ad Vingerhoets is a professor of clinical psychology at the Netherlands’ Tilburg University, and he’s one of a small number of scientists who are beginning to unlock some of the secrets contained in tears. “Our idea is that the function of crying should be searched for in the intra-individual domain—it’s a strong form of communication,” says Vingerhoets, who’s authored books including Why Only Humans Weep. “It’s a strong signal for, ‘I need you. I need help. And you should support me.’”

Crying doesn’t always work, of course. Often, especially when you’re in public or in conflict with others, any relief you get is situational—it can depend on factors including who you are, what you’re going through, and what the response from others is after you cry.

Because crying alone doesn’t necessarily have a big effect on you. In one study, Vingerhoets says, he and his fellow researchers asked people how they felt after crying—better, worse, or the same?—and found that while 50 percent reported feeling better, 40 percent reported feeling no different, and 10 percent reported that they actually felt worse.

“How do others respond to your crying? Did they react with understanding and provide comfort and support? OK, then you feel better than before,” Vingerhoets says. “If they respond with disapproval, or become angry, or they start laughing at you and you feel ashamed, then you do not experience any mood benefits.”

OK, so why do we angry cry?

Usually, people associate crying with sadness, but Vingerhoets says it's more about the feeling of being powerless. “So, you don’t know how to react. You are in a situation, and you don’t know how to deal with that situation.”

In conflict situations, Vingerhoets explains, we might “experience a kind of powerless anger,” or an emotional cocktail of sadness, anger, frustration, and powerlessness. “You can feel anxious and powerless, or sad and powerless—[this happens] very often, especially in the case of a serious loss.”

Anger rarely exists in a vacuum—you're often not only angry, but also sad, or anxious, or feeling vulnerable. As Romanoff explains, you might be associating the tears you're crying with your feelings of rage because that's what you're expressing outwardly or accessing most easily, even though anger is probably not the only emotion you’re feeling at the time.

“While anger can be a loud and expressive emotion, typically people have a lot of underlying emotions below the anger that gets washed over,” Romanoff says. “Ultimately, people are more comfortable staying within the territory of anger because of the sense of righteous indignation it provides—even if it places a Band-Aid over the fundamental aspect of the situation or their feelings.”

Depending on the situation, Vingerhoets notes, “the difference between anger and sadness becomes smaller.”

Is there a way to stop yourself from crying?

Obviously, there's nothing wrong with crying. In fact, few mental health experts would encourage you to stuff down your feelings, generally speaking. “I would not recommend suppressing your emotions,” says Romanoff, when I ask her if there’s a way to stop a cry when you feel it coming on.

She says that in instances of anger, specifically, crying—and no one wants to hear this less than me—can actually be a benefit: “One way to look at this is that our tears are a way our body forces us to pause and take inventory on the situation.”

In other words, you’re unlikely to reach any kind of resolution during a time of extreme anger. Maybe you’re in a justifiable all-out rage at your boss or your partner, but is the screaming match foreshadowed by the tears welling up in your eyes really an effective way to solve the issue? Oncoming tears can be your sign to take a beat, step away, and compose yourself, saving you from crying mid-argument and perhaps leading to more effective communication overall.

“Our tears are a way our body forces us to pause and take inventory on the situation.” —Sabrina Romanoff

But there are also times when tears aren’t super convenient and yet conflict is inevitable. Maybe you’re mid-work-presentation or feuding with a family member, and crying would undermine the point you’re making, or make you feel weak. In cases where crying is just not ideal, Romanoff does have a few suggestions.

“The most effective is through distraction, by providing alternative stimulation,” she says. That can mean pinching yourself, making big movements with your body, or focusing on your breathing. Other experts have recommended getting outside into some fresh air or drinking a glass of water. But whether you cry or not, Romanoff emphasizes that there’s no reason to feel embarrassed or ashamed—after all, it’s only human.

“When emotions are heightened or when in an intense situation, we can struggle to put words to our feelings,” she says. “Crying helps to convey our experience when words fall short.”

Follow Em Cassel on Twitter.

]]>
3adx93Em CasselDuncan CooperEmotionsCryingragepsychologywellness
<![CDATA[Kin Euphorics Made My Dry January a Little Dumber ]]>https://www.vice.com/en_us/article/y3p83b/bella-hadid-kin-euphorics-reviewFri, 27 Jan 2023 16:50:38 GMTAdvertising has always carried the promise that a better life is just a purchase away. Wellness brands in particular pound this maxim home—that with this help of one special product, we will finally become more beautiful, more vibrant, more balanced, more focused and productive. Of course, we’re inundated with enough ads at this point that we know the game. But every once in a while, a company comes along that sells us on something we should know better than to want. For me, that company was Kin Euphorics.

Kin Euphorics is a non-alcoholic alternative spirits company with 160,000 Instagram followers and an It Girl sign-on from its co-founder, model Bella Hadid. Its beverages are made with nootropics, substances purported to have cognitive benefits, and adaptogens, herbs or mushrooms that proponents claim can decrease stress and induce “homeostasis” in the body and mind. Branding-wise, Kin Euphorics is like Goop’s Gen Z daughter, a member of the same clique as other adaptogenic beverage brands like Recess, famous for their CBD-infused seltzers, and Moon Juice, best known for something called “Sex Dust.” From the influencer-friendly gradient backgrounds that adorn its cans to the company’s designer smoothie, available for a limited time at buzzy Los Angeles grocery store Erewhon, these pricey drinks ($57 for a 12-pack of 8-ounce cans on the Kin website) are a status symbol for the Emma Chamberlain fanatics among us.

Two things about Kin Euphorics really sold me. The first was Hadid’s involvement. After all, she’s the woman whose candids launched a thousand mini-platform Uggs, which is to say: I trust her taste. The second reason I found Kin Euphorics so alluring had nothing to do with looking great in an Instagram carousel: it was the not-so-subtle implication that drinking all of this shit could give me some kind of buzz to tide me through Dry January. What else was I supposed to think, with all the talk about mushrooms and product descriptions like “melts in your mind” on the box of a drink called Actual Sunshine. Its mixer High Rhode promised to “help to elevate serotonin levels so you can access your inner strength and charm,” and “nurture neurotransmitters in charge of mood, ecstasy, and reward so you can find yourself a little more talkative, a little more charming and ready to connect.” Sounds like drugs to me!

After a few weeks without drinking alcohol, I was actively excited for my “Full Kin Kit”—a package containing four flavors of canned drinks and two bottles of mocktail mixers—to arrive. I didn’t expect to become a convert, but I did expect the drinks to provide… something. Spoiler alert: Nothing I drank from Kin Euphorics put me on “a sensorial journey towards enlivened peace,” like the Kin Spritz’s can suggested, or gave me the feeling of “naked forest bathing at midnight,” from the can of Kin’s Lightwave.

Mostly, the drinks just pissed me off.

I tried Kin’s canned beverages first, because they felt a little more casual than the mixers, which came in 16.9 oz glass bottles and were labeled as dietary supplements. I expected something herbaceous and weird. Maybe something exotic, like a cross between a maté and something probiotic and zingy like tepache, or something vaguely medicinal, like cough syrup and seltzer mixed with apple cider vinegar. What I got, in essence, was lightly carbonated juice.

Lightwave, a drink promising “grounding calm,” was an apple juice-based offering that tasted like Christmas with notes of fluoride, haunted by the ghost of carbonation past. My best guess is that it was supposed to be an amaro dupe. Actual Sunshine tasted like the pineapple juice that was its main ingredient with a subtle, metallic tinge—I think they were aiming for a mimosa. The absolute worst offender, which I couldn’t finish a can of, was the brand’s rosé substitute Kin Bloom, a mix of carbonated water and white grape juice concentrate that filled me with memories of Communion wine rather than “beaming joy.”

The only Kin product I could see myself purchasing again was the Kin Spritz, the Aperol spritz stand-in that delivered the only noticeable sensation I felt throughout the experiment: It tasted good, and more importantly, it had 50 milligrams of caffeine, so a couple cans worked as a coffee stand-in while I thrift shopped with a friend over the weekend. (Actual Sunshine has around 33 milligrams of caffeine per can too, but my fucked-up tolerance rendered this small amount undetectable.) The only beverage I full-stop declined to try was Kin’s “nightcap” mixer Dream Light, which is still sitting on my kitchen island. The bottle says it has “a kiss of melatonin,” 0.25 milligrams to be exact, and I do not want to mess with it.

To give Kin a spin in a truly social setting, I took the other bottle of mixer to a birthday party on Saturday night. The hostess lovingly crafted a mocktail for me with a few glugs of High Rhode, a splash of soda water, and a dried slice of blood orange. The drink was a handsome maroon color, and it looked great in my hand, but it tasted like nothing—like the ice I was using to chill it. I drank it quickly and then abandoned my cup for a can of black cherry seltzer my boyfriend brought. When I left the party a few hours later, I abandoned my mixer next to a slightly emptier bottle of its competitor Ghia with zero remorse.

Now, I didn’t drink coffee for the week I worked through Kin’s offerings, which might account for some of my negative impression of the fare. I also, I guess, could have stuck with it a while longer—apparently, it takes two to three weeks for an adaptogen regimen to really kick in and give off tangible effects. But if I wanted to reap the benefits of Kin ingredients like L-theanine, collagen, and reishi mushrooms, for cost reasons alone I’d opt for a supplement instead.

If anything, my commitment to trying Kin’s line of beverages made my Dry January even more arbitrarily restrictive than it already was—and that extra layer of complication was not something I needed at all. I checked off a lot of the things I wanted to accomplish with my month of alcohol abstinence: I got back into my workout routine, caught up on all the life maintenance tasks I neglected during the holidays, read more and ate less takeout in bed. None of that happened because of any fancy, well-branded herbal beverage, and after my experiment, I feel confident I’ll be just fine without them.

VICE may receive a commission if you buy products through the links on our site. Read more here.

]]>
y3p83bKatie WayDuncan CooperCathryn Virginiawellnesskin euphoricssobrietydry januaryBella HadidadaptogensNootropics
<![CDATA[Trans People Are Seeking Nonbinary Bottom Surgeries]]>https://www.vice.com/en_us/article/4axp3n/trans-people-are-seeking-nonbinary-bottom-surgeriesMon, 14 Nov 2022 17:30:24 GMT“How do you describe to someone else the process of becoming real?” asked Hyde Goltz, a 42-year-old nonbinary mortuary student from Minnesota’s Twin Cities. They’ve been trying to find the words to describe their journey since 2014. That year, they received a vagina-preserving phalloplasty, meaning they now have both a vagina and a surgically constructed penis.

Goltz is part of a growing cohort of trans patients who desire surgeries that allow for dual sets of genitals or other medical interventions that don’t strictly adhere to binary gender norms. VICE spoke to Goltz and three other people about their experiences with individually customizable genital surgeries that affirmed their gender identities. All of them talked about how that put them at odds with some medical providers, compounded systemic barriers to gender-affirming care, and, for some, alienated them from others within the trans community. However, these surgeries ultimately helped them feel more at home in their bodies.

Goltz and many others seeking bigential anatomy—or, both a penis and a vagina—call themselves “Salmacians,” a term coined by sci-fi writer Raphael Carter in the 90s to describe people who want a mixed set of genitals. The term “Salmacian” is derived from the Greek myth of Salmacis and Hermaphroditus, wherein the nymph Salmacis begs the gods to unite her with her male object of desire, Hermaphroditus, and the gods merge the two into a single androgynous being. Despite the relative obscurity of the term—none of the medical professionals VICE interviewed for this article had heard it before—online trans communities claiming it as an identifier have grown into the thousands.

So, too, has come backlash. Many of the people interviewed for this article requested that their names be changed or partially omitted for privacy reasons, citing public vitriol and violence towards trans people. But for Goltz, who runs a blog chronicling their transition, the majority of the online harassment they receive comes from other trans people. They said they’ve received messages telling them they’re “making a mockery” of the community by “only going halfway.” They described a torrent of derogatory comments from self-proclaimed “trans-medicalists”—those who believe transness is contingent upon a diagnosis of gender dysphoria and a full medical transition. “That was the hardest hate mail to take—other trans people saying, ‘No, you're doing it wrong,’” Goltz said.

The vast majority of trans people never receive genital reconstruction surgery for a host of reasons, including fertility concerns, sexual preference, and systemic barriers in cost and access. Most of those who do undergo genital surgery end up with “binary” external genitalia—a penis or a vagina. Genital reconstruction is commonly known as “bottom surgery,” but the umbrella term covers many different procedures that trans people receive: orchiectomy, penectomy, scrotectomy, vaginectomy, vaginoplasty, phalloplasty, metoidioplasty, and more, often in combination with one another.

There are no national or international databases tracking the prevalence and outcomes of these procedures, but trans healthcare providers interviewed for this article anecdotally said the same things: Fully binary surgeries are most common. Vagina-preserving phalloplasties, in which a person receives a surgically constructed penis without removing the vulva and vaginal canal, are somewhat common; and phallus-preserving vaginoplasties are extremely rare. Gender nullification, a series of surgeries that remove all external genitalia beyond a urethral opening, is less common but also practiced among cisgender gay men. None of the providers were aware of a case of gender nullification performed on someone assigned female at birth.

Richard Santucci, a surgeon at The Crane Center for Transgender Surgery in Austin, Texas, estimated that he performs the vagina-preserving phalloplasty Goltz received on about 20 percent of his trans-masculine patients each year, and not just nonbinary ones. Many binary trans men don’t pursue vaginectomy, or the surgical closure of the vaginal opening and removal of the vulva, to preserve fertility or sexual function, or because it simply doesn’t trigger their dysphoria.

Santucci emphasized that while trans medicine, including bigenital procedures, is safe, sound, and proven science, trans healthcare providers need to pay more attention to patients seeking these procedures, especially as more queer people embrace explicitly nonbinary identities.

Since he began practicing trans-focused medicine in 2016, Santucci said he has seen shifts in the field. He wrote several dozen papers on genital reconstruction for trans patients at the start of his time at The Crane Center. At the time, he said, this made up a considerable amount of the abstracts on the subject. “One research group should not be able to write a significant chunk of the literature in a year.”

This gap in resources dedicated to trans healthcare can make it substantially harder for trans patients to access it. “It’s been a challenge to get tailored hormone replacement therapy as a nonbinary person,” said Ryan, a London-based computer security researcher in their late 30s who has become an advocate in their industry for trans issues.

Ahead of their phallus-preserving vaginoplasty in 2021, Ryan felt tacit pressure to go on hormones. Although the surgeon they ultimately chose had a hormones-optional policy, other trans providers expressed skepticism surrounding Ryan’s transition. The Standards of Care 8, the professional guidelines crafted by the World Professional Association for Transgender Health (WPATH) discourages antiquated practices of requiring hormone regimens for trans patients to “prove” their transness.

Other notable additions to this version include, for the first time in the SOC’s 40-year history, sections distinctly set out to address the nonbinary community and “eunuchs” (a subset of gender non-conforming individuals who are assigned male at birth, may or may not identify as cisgender, pursue chemical or surgical castration and self-identify with the term).

The updated chapters call for removing barriers to gender-affirming healthcare by focusing on “individual assessments.” For example, it urges surgeons to consider taking on nonbinary patients regardless of whether there has been a “social transition” and regardless of whether a patient has been on hormones, unless necessary for their desired procedure.

Ryan liked the hormones and stuck with them, but has been frustrated by the lack of standards for hormone levels catering to nonbinary patients and their goals. “There was a lot of me digging through publications and medical journals trying to figure out what might be good to do and finding providers willing to work with me.”

Patients seeking bigenital surgery aren’t the only trans people receiving less common forms of gender-affirming care. Mels, a 34-year-old office manager in Delaware, is agender and asexual. She wanted a full gender nullification procedure—a wholly smooth exterior. “It used to always be at the forefront of my mind—anytime I'd go to the bathroom, take a shower, or change my clothes, so multiple times a day,” Mels said. “But now that I don't have any genitals, it's not something I think about, which is the goal.”

Following her orchiectomy, or the removal of the testes, Mels filed with insurance to receive a vaginoplasty, which is the surgical construction of a vagina. In the months of waiting, she discovered there was another, better option: she could just remove her penis, also known as having a penectomy. But she couldn’t find a surgeon in New England or New York who was willing to do it. Mels had to fly out to a private practice in Michigan to receive the care she sought.

“I got fed up with waiting for something that I didn't even want,” she said.

Because Mels had to travel for the surgery, she said she racked up exorbitant bills for flights, hotels, and post-op care—in addition to paying $7,000 out-of-pocket for the procedure itself, because many insurance companies don’t cover penectomies in the same way they do for orchiectomies.

Healthcare providers for the queer community have been expanding their care to accommodate these diverse requests, according to Loren Schechter, a Chicago-based plastic surgeon and the treasurer of WPATH. “The underpinnings of the SOC8 is the individualized nature of care. We have to address the person who's sitting before us,” he said.

Schechter emphasized that while medical providers are still finding new ways to better serve the trans community, modern procedures have a long and storied history in the fields of urology, gynecology, and plastic surgery.

“We often are tasked with creating different and innovative approaches using our knowledge of anatomy, wound-healing, physiology, and drawing from our experience in reconstruction of other areas to meet patients’ needs,” he said. “It’s important to have that historical perspective, the recognition that surgery and medicine are evolutionary processes where we build on all of the work of our predecessors. The field didn't start yesterday, and it didn't start five years ago.”

Cis- and heteronormative perspectives have long overshadowed queer healthcare. This framework has become especially fraught as ideas surrounding what genitals can do and mean evolve.

According to Eric Plemons, a medical anthropologist at the University of Arizona who studies the politics and practice of transgender medicine, early surgeons could only remove—or add—a phallus. “In the same way that the absence of a penis constituted a female, the presence of the organ was a way of constituting maleness for trans men,” he said. “You can see the centering of straight sexual pleasure.”

Pursuing so-called anatomical “correctness” has been the motivating goal for trans medicine for decades. “We can see in the history of trans medicine specifically—the idea that you're asking for [trans-affirming medical interventions] means that you're not really healthy enough to consent to me doing it,” he said. At the same time, he emphasized that “medical boards, licenses, and personal ethics inform what a surgeon perceives as beneficial to a patient[…] Surgeons are not just technicians-for-hire who alter bodies in whatever way a person requests.”

“The main thing I learned from the trans community is that we don't live in a binary world. So why should my treatments be binary?”

“There are quite a few surgeons that don't do [bigenital surgery],” said Curtis Crane, the founder of The Crane Center. “They believe there’s an inherent harm, that you're leaving someone halfway, in-between, and therefore, incomplete.”

Crane’s practice rejects that line of thought, as does the WPATH. “The main thing I learned from the trans community is that we don't live in a binary world. So why should my treatments be binary?”

Goltz told VICE they were initially turned away by multiple surgeons when they articulated their request for a bigential procedure. But bias impacts not only patients’ access to surgery—it can also increase risks in their post-op care, which, for many patients, is a lifelong endeavor.  Vaginoplasty patients use dilators indefinitely so that their vagina doesn’t close up after healing. Orchiectomy recipients, or those who have their testes removed, must often go on testosterone to balance out their hormone levels. Those who receive a surgically constructed penis through metoidioplasty or phalloplasty often need additional surgical shaping and upkeep.

“I'm afraid to leave New York. What if something happened to my genital region and the surgeons don't even know what to do with me?” said Julien, a Brooklyn-based 26-year-old performance artist and sex worker under the name TS Hermaphrodite. He received a vagina-preserving metoidioplasty and phalloplasty in August and November of 2021, respectively. “I am chained to my surgery team for the rest of my life. Until more doctors know how to deal with this kind of surgery I can only go to them with it.”

Still, Julien said the rewards of surgery outweighed the cost of aftercare. “I would not have been a happy, full individual unless I had bottom surgery,” he said.

Back in Minnesota, Goltz recalled their early days post-op. “I woke up in the hospital bed, and I had a definite feeling of completeness,” Goltz said. One of their nurses asked them if they’d pursue chest masculinization, or top surgery, next.

“I thought about it for a minute and said, ‘I think I'm done,’” Goltz said. “I feel like me now.”


Correction: This story originally said the cohort of people undergoing surgeries that allow for dual sets of genitals was increasing. However, since earlier forms of trans healthcare resulted in a “bigenital” anatomy, it would be more accurate to say that requests for this outcome are increasing. We have updated the story to clarify, and regret the error.

Follow Sarah Emily Baum on Twitter.

]]>
4axp3nSarah Emily BaumAmy Rose SpiegelLGBTQgender-affirming surgerieshealthcareIdentitytransgendernonbinaryBottom Surgerysalmacians
<![CDATA[When Online Harassment Is So Awful You Need Trauma Therapy]]>https://www.vice.com/en_us/article/dy74qk/trauma-therapy-for-online-harrassmentMon, 03 Oct 2022 16:33:05 GMT“I could sort of feel myself hanging by a thread,” said R.J. Aguiar, a 33-year-old video producer and content creator from Los Angeles. He was describing the psychological symptoms he experienced after becoming the target of online harassment—a growing problem in the United States, with 4 in 10 Americans reporting that they’ve experienced it, according to a 2021 Pew Research Center report. “There’s all these negative emotions,” he said. “There's feelings of paranoia and feelings of rage against a threat that you can't see and you don't know. It feels like everybody's against you… it kind of turns everybody into a potential enemy.”

R.J. is best known for starring in one of the first same-sex daily YouTube vlogs, which chronicled the ups and downs of his life with his husband. Since that relationship ended 11 years ago, he has been tormented by anonymous needlers who favored his ex, making it impossible for him to eat, sleep, or work due to their attacks. “They will say and do whatever they can to try and get under your skin,” he said, describing vitriolic comments about his sexuality, fake social media accounts set up in his name, and coordinated attacks to entrap him or get him fired from his job. In one incident, a catfisher on an online dating app leaked his private videos and photos to his mother.

Although there has been limited research on the health implications of online harassment, much like other forms of trauma, survivors of online harassment experience responses on a spectrum ranging from subtle to deeply destructive. Exposure to trauma has been linked with emotional dysregulation or mood swings, as well as agitation and insomnia—and when the harassment is online, these instances of abuse can be sustained over more extended periods, continuously retraumatizing people at all hours of the day, virtually anywhere. According to a 2021 review published in Cyberpsychology, Behavior, and Social Networking, victims of online harassment reported “detrimental consequences for their mental health, including depression, suicidal ideation, and panic attacks.”

“It feels like everybody's against you… it kind of turns everybody into a potential enemy.” —R.J. Aguiar

For R.J., starting trauma therapy under the care of a counselor and a psychiatrist who recognized the consequences of online harm and PTSD was invaluable to his recovery, and it’s why he ultimately decided to stop working as an influencer full-time. But this isn’t only an issue for the soul-baring content creators among us. It’s becoming more likely that at some point in our lives, we might all end up having unpleasant interactions online, to say the least—and given the increased likelihood of needing the internet for work and connecting with family and friends, for most people simply logging off isn’t an option. So if online harassment is affecting your physical, emotional, and social wellbeing, what can you do about it?

According to Jami Dumler, a licensed clinical social worker with Thriveworks in Bethlehem, Pennsylvania, treatment is all about “learning how to calm and manage emotions and nervous system dysregulation effectively.” Similar to the interventions for acute anxiety, trauma, or post-traumatic stress disorder, treatment for online harassment can involve psychotherapy (such as EDMR, NARM, or CPT, whether done alone or with a group), antidepressants (particularly SSRIs and SNRIs), and antihistamines or beta-blockers when appropriate. For best results, Dumler said, it’s important to seek the care of a specialized therapist who can tailor treatment for specific and unique triggers whenever possible. For example, if someone has experienced cyber harassment in the form of doctored photos or leaked information, they might look for a therapist who has experience with trauma and sexual abuse.

How do you know if you’re a good candidate for treatment? Warning signs to look out for include getting so distracted by what’s going on online that you’re unable to show up in your personal life, fulfill daily tasks at work, or focus at home, said Dumler. “Sometimes people get really overwhelmed with online harassment and kind of shut down and detach from everybody. So that would be another warning sign [that you’re] not feeling joy in the usual things,” she said. In addition, feelings of shame and physiological changes such as disturbed sleep and drastic changes in appetite for more than a few days are all cues that your body is likely under duress from stressors, and you should seek help, she said.

“Treatment is about learning how to calm and manage emotions and nervous system dysregulation effectively.” —Jami Dumler

Both Dumler and Howard Pratt, a board-certified psychiatrist and Behavioral Health Medical Director at Community Health of South Florida, said they encourage their clients to limit the source of their abuse by disengaging with a particular platform. They recommended reporting harassment, whenever possible, and working on ways to feel empowered and take back control, like starting a new account, going private, or blocking users. In addition, Pratt recommended supportive therapies that help those who have suffered through trauma, such as yoga, acupuncture, and somatic therapy, which can release points of tension in the patient’s body, strengthening the mind-body connection. “A trauma is a trauma,” he said. “The source doesn’t matter.”

According to data released by the Women’s Media Center on online abuse, online harassment primarily happened to women, with much of it veering towards sexual harassment. And despite the prevalence of anonymous attacks, many people who experience online harassment actually know their abuser—whether it’s an in-real-life acquaintance, a former partner of someone they’re dating, or an ex. “More of the stalking, spreading rumors, sexual harassment, that [behavior] typically does come from someone you know,” said Dumler. She’s also noticed an increase in her LGBTQ clients seeking treatment for harassment due to their gender expressions and sexuality, as well as clients going through a breakup or experiencing intimate partner violence in her practice.

Maggie, a 32-year-old podcaster, is undergoing treatment for the trauma she suffered after her ex-partner and his girlfriend created an anonymous Instagram account that posted confidential legal documents from her custody battle and called her a horrible mother. She found out about it after someone sent her a screenshot of the posts and discovered that the account was friend-requesting all of her followers on social media and sending them messages claiming she was an unfit parent.

“It really made me afraid,” Maggie said. “I was afraid to be online. Growing up with the internet, we could connect when we want to, [and] we [could] disconnect. Now, as an adult, and having all these extensions, my social media isn’t just my social media. It supports my business. I got super anxious and super depressed. I was always afraid something is going to happen.”

Maggie’s fiancé, an attorney, advised her to document all of her online harassment by taking screenshots that she presented in court, which ultimately helped her win her custody battle against her ex. But she said she wouldn’t have been able to cope with her situation if not for the help of talk therapy with a trauma-informed therapist.

Her therapist diagnosed her with generalized anxiety disorder after the incident and told her to take space and time before engaging with the internet in an emotionally reactive way every morning. “The only thing I would have done differently,” Maggie said, “is I wouldn’t have given [my ex] any, like, pleasure [because of] my reaction. That’s why they’re taking it to a public platform. Talking to my therapist and understanding why people do these things, and how it’s not really about you, really helped.”

Follow Suzy Katz on Twitter.

]]>
dy74qkSuzy KatzDuncan Coopertherapytrauma therapyonline harassmentonline abuse
<![CDATA[5 Abortion Providers on How Bans Are Putting People's Lives in Danger]]>https://www.vice.com/en_us/article/3addmv/abortion-providers-on-bans-after-roe-overturned-interviewFri, 05 Aug 2022 19:17:31 GMTAbortion is now banned in 10 states, severely limited in another four, and threatened in about half of the country, in total. In states where exceptions may be made in cases of rape or incest, or for the sake of a patient’s life or well-being, guidelines are vague about what kind of abortion or abortion-adjacent care is still legal. This has left providers to decipher the unclear exception rules—and contend with the potential for prosecution, should they guess wrong. Abortion funds and practical support organizations have mobilized to provide resources to abortion seekers however they can.  But, of course, they’re unable to offer many of the crucial in-person abortion services that so many patients continue to seek.

VICE spoke with five abortion providers whose work has been hit hard in states with varying levels of abortion restrictions triggered by the Dobbs v. Jackson Women’s Health Organization decision.

Interviews have been edited for length and clarity.

Hanna Peterson (she/her), 30, Louisville, Kentucky  

Hanna Peterson in a mask reading
Photo courtesy of Hanna Peterson

The Dobbs decision triggered an abortion ban in Kentucky, making abortion a felony offense with exceptions to protect the life of the pregnant person. An ACLU-helmed restraining order blocked this trigger ban, as well as a “heartbeat ban,” from taking effect for several weeks. On August 1, an appeals court ruled to reinstate the so-called heartbeat bill, which is a near-total ban on abortion. Hanna Peterson, an OB/GYN, has been dealing with these constant legal changes while treating patients.

It’s been legislative whiplash in Kentucky since the Dobbs decision. Prior to the trigger ban, we were able to provide abortions up to 21 weeks and six days. Immediately after the Dobbs decision, we had to turn everyone away from our abortion clinic, including patients who were scheduled to get abortions that day. 

After an ACLU restraining order came through on June 30, we were able to provide abortions up to 14 weeks and six days, which was much better than a total ban. Now, an appeals court reinstated the trigger law that bans abortion at about six weeks. For a lot of people, even a matter of a couple of days makes or breaks their situation, so this is devastating. 

After the Dobbs news leaked, we began doing cross-training with our colleagues in the emergency room. There are rarely complications with medication abortion when abortion care is legal. However, I believe my emergency medicine colleagues will see more complications from self-managed abortions. Patients will be seeking abortions without guidance of a medical professional. Some may not be suitable candidates for medication abortion if they’re too far along in the pregnancy (meaning, past 10 weeks), which is hard to know without an ultrasound, or they have medical conditions that make medication abortion unsafe for them, like severe anemia, heart problems or ectopic pregnancy. 

As much as we've tried to prepare ourselves and our colleagues, nothing can prepare you for the feeling of being totally helpless, or for having to turn patients away.

We trained emergency room staff on how those patients might present; how to manage a septic abortion; and how to provide support for those patients in a way that is non-judgmental and comprehensive. Emergency room providers are pretty used to seeing miscarriages. But patients may increasingly come in with catastrophic bleeding that needs to be stopped surgically. So, for our colleagues who are at facilities that don't have OB/GYNs, we're looking at training them on how to do bedside D&Cs, or manual vacuum aspiration (MVA) procedures, which can be provided at 12 weeks of gestation or less. They're very simple. They require a large syringe that is a highly pressurized system that needs to be special-ordered in advance, because not all hospitals stock them.

As much as we've tried to prepare ourselves and our colleagues, nothing can prepare you for the feeling of being totally helpless, or for having to turn patients away. As a physician, you have this very unique skill set where you can help people. All of a sudden, we have to say, “I would do this in a heartbeat if I could—but I can't.”

Jonathan Reese* (he/him), Boise, Idaho

When Roe v. Wade was overturned, trigger laws in Idaho banned all abortions except in the case of rape and/or incest or to protect the life of the pregnant person. The Department of Justice is currently suing Idaho on the grounds that its severe abortion restrictions will endanger patients’ lives and cause them significant bodily harm. Jonathan Reese, a doctor in Idaho who asked to use a pseudonym because of safety and privacy concerns, wears many hats in the medical field, including inpatient and outpatient medicine, obstetrics/pediatrics. Before the ban, he provided abortions. 

I’ve been providing abortions for about seven years. With Roe overturned, I will no longer be able to provide this vital service in the state, except in cases of rape or incest, or when there is risk of death to the patient. 

I foresee a lot of problems with these restrictions. In a case of rape or incest, according to the law, you’re required to have a police report. As we know, very few people actually go to the authorities when these cases arise. If they do have a police report in hand, the provider then has to review it and ensure its legitimacy before they proceed, which could cause a huge delay to abortion care. 

There's a lot of vagueness about what an exception for risk to the patient means.  There’s no steady guidance. There are a lot of risks that evolve throughout the pregnancy that we can detect early on, where—before the Dobbs decision—we provided patients with options for treatment, which included termination of the pregnancy before complications arose. 

People who would have lived before are now going to die because doctors will be too worried about providing them with care. 

For example, if someone’s amniotic sac ruptured prematurely, and that person were to give birth, then that fetus, if pre-viable, would not survive. Before Dobbs, there was the option of inducing that pregnancy, knowing that that would most likely result in a non-viable fetus. The other option would be to try and continue the pregnancy to viability. But that has a huge risk of infection, and the patient could become septic. They could die. So: Is the rupture of the membrane considered reasonable enough to terminate? Or do you have to wait until a patient is septic? 

In Idaho, which has criminalized abortion, doctors are going to be incredibly risk-averse. People who would have lived before are now going to die because doctors will be too worried about providing them with care. 

Our stance, as physicians, is that these decisions need to happen between a patient and their provider. Legislators are not medical professionals. There are a lot of things that lawmakers just don't understand that make these decisions very complicated. Now, we don't know what to do about them, and by restricting us from providing the highest standard of care, people will die.

Not being able to perform abortions in the state of Idaho anymore is difficult. It’s weighing on me very heavily. That procedure is a very safe outpatient procedure that we do. But it's a skill that we use in a lot of other things: The biggest example would be miscarriage management through aspiration for someone that has a fetal demise. That is the same way that we would evacuate the uterus for an abortion. Now, this skill that I've been trained in, I won't be able to use. That'll be detrimental to our patients, too—that providers that are going to lose those skills.

DeShawn Taylor (she/her), 47, Phoenix, Arizona

DeShawn Taylor looking at a camera
Photo courtesy of DeShawn Taylor

Arizona has faced two bans: a pre-Roe, 19th century total abortion ban that is currently up in the air legally, as well as a 15-week ban that is slated to take effect in September. DeShawn Taylor is an OB/GYN in the state who provides full-spectrum OB/GYN care and gender-affirming care. Before the ban, she provided abortions, and she has also trained providers in abortion care.

As long as I've been a doctor, I've been an abortion provider. In my intern year, I realized a large number of OB/GYNs that I trained with were ideologically against people receiving abortions,  so I started to consider making abortion care a very prominent part of my work.

Right now, there’s a pool of abortion providers traveling from state to state because there is no local person who provides the care. That will only get worse.

When I started my practice, my goal was integrating abortion care with other types of general care. I created an environment where people seeking abortions could feel comfortable and safe. Over nine years, I also fostered this really cool pro-choice group of patients who know that their doctor does abortions. And there are people now coming to me for their GYN care, because they know I provided abortions, and because I added gender-affirming care last summer. 

Right now, there’s a pool of abortion providers traveling from state to state because there is no local person who provides the care. That will only get worse. As someone who has dedicated a significant amount of time to training the next generation of providers, I'm very concerned about that. Opportunities for training were already dwindling prior to the decision. I had to cancel trainees coming from Vermont and New Jersey for this month when we decided to pause care. They would have been the 19th and 20th states from which people have traveled to receive abortion training from me, not including Canada. The public discourse is, “Of course, someone should be able to get an abortion if they’re raped, or if there’s a tragic fetal diagnosis.” So who's going to do them? How will they get the skills to provide those types of abortions, when they don’t ever do them?

Abortion service was essentially a cash-pay service because of Arizona’s insurance restrictions. The loss of revenue has been worse than I had anticipated. Keeping the doors open is a very big struggle, but I’m fundraising. I’m committed to staying in Arizona and keeping my clinic open. However, I want to continue training abortion providers, so I’ve started to consider the possibility of co-partnering with a facility out of state where abortion is legal. If a facility is not currently providing surgical abortion services, I would be able to provide services for them there while continuing my hands-on abortion training program.

Catherine Romanos (she/her), 43, Columbus, Ohio

Catherine Romanos looks at a camera
Photo courtesy of Columbus Medical Association

In Ohio, a six-week ban took effect after Roe was overturned. This translates to about two weeks after a missed period. Catherine Romanos is a family doctor who provides abortions in Ohio. 

We’d prepared for this since December, when the oral arguments for the Dobbs case were heard. After the decision, I learned that no matter how much you prepare for grief, you can't prevent it. 

How do I not abandon the people here and continue to practice somehow? I don't know.

The decision made me reevaluate my life. I started applying for Illinois and Michigan medical licenses. But I think I want to stay in Ohio, because if I left, I would feel an intense survivor’s guilt about abandoning people here. But I also feel like I am forgoing a skill set that's not very common that might be needed in other places. How do I not abandon the people here and continue to practice somehow? I don't know.

I'm fielding a lot of calls from colleagues in other fields such as emergency medicine, who used to say to patients, “Just go online and find the abortion clinic.” And now they don't even know what to tell patients. Everyone's scared to break the law, but at the same time, they're trying to make sure that their patients are getting care where they can. 

Who wants to practice in a place where they could go to jail? 

An after-effect that I anticipate is that people with higher-risk pregnancies will have to carry to term. I saw a patient for an abortion a couple of weeks before the Dobbs decision. She had a cardiac arrest during her vaginal delivery last year. She didn’t want to have another delivery, especially because of her previous traumatic and dangerous birth—she has a kid to take care of. Now, she wouldn’t have been able to get a surgical abortion in Ohio.

My colleagues are going to be really busy taking care of a lot of really sick patients while also worrying about retaining students, residents, and doctors: Who wants to practice in a place where they could go to jail? 

It’s so striking to me that we still have a 24-hour waiting period in Ohio after Roe’s overturn. That waiting period was ostensibly put into place to give people time to think about it, right? But everyone is now feeling very rushed to decide before cardiac activity develops. So what do they want? Do they want to rush people? Or do they want to give people time to think about it? Because more than one patient has said to me, “I wish I had a couple of weeks to sit with this before I went ahead.”

Diane Horvath (she/her), 43, College Park, Maryland/formerly traveling to Alabama)

Diane Horvath looks at a camera
Photo by David Choy

Alabama has a total abortion ban from 2019 that went into effect. Abortion is protected in Maryland. Diane Horvath was a traveling abortion provider who visited Alabama once a month to provide care where there would otherwise have been no or very few providers. She has not been able to continue working in Alabama since Roe was overturned. 

My commitment to providing abortion was one of the reasons I chose OB/GYN as a specialty and sought out a residency providing that training. 

In January, I began working as a traveling abortion provider. I went once per month to two independent clinics in Alabama which had a physician-only restriction even pre-Dobbs, which meant nurse practitioners and midwives couldn’t provide abortion care there. The pool of physicians who are willing and able to travel is limited, so it was really challenging to find coverage, particularly at the Montgomery clinic which relied entirely on traveling physicians.

During my time working in Alabama before the Dobbs decision, I saw patients for both procedural and medication abortions. Many of the patients traveled long distances due to the lack of clinics and available appointments. We saw patients from Louisiana and Mississippi who were unable to get appointments at the clinics in their home states because of the fallout from SB 8 in Texas

I said, “However many times you need us, we'll be here for you”—and then we realized that this wasn't true anymore. 

On my last trip to a Montgomery clinic in mid-June, you could feel the anticipatory grief in the air. When I left, one of the wonderful staff members said, “Until next time, doc!” Then we looked at each other and knew there probably wasn't going to be a next time. On that same trip, I spoke with a patient who was there for her second abortion and feeling a lot of shame about it. We talked about how we spend 30 or more years trying not to get pregnant, and that it's really normal to get pregnant when we don't want to be sometimes. I said, “However many times you need us, we'll be here for you”—and then we realized that this wasn't true anymore. 

People in Alabama are still going to need gynecological care, including pregnancy ultrasounds and follow-up after self-managed abortion (or abortions they obtained out of state), so the clinic in Tuscaloosa I worked with is working on staying open to continue these services. They're planning to provide a wider range of routine reproductive care, like annual exams, contraceptive visits, and gender-affirming care. But while they're working on a plan, they have to turn patients away, and they're feeling a ton of grief.

I've only become more committed to providing abortions because I've been able to witness countless times how important abortion is as a normal part of healthcare. Opening Partners in Abortion Care is one of the things that has kept me from despairing in the last few months. My business partner, Morgan Nuzzo, and I had already started planning last fall to open the clinic sometime in late 2022, because there already wasn't enough capacity to care for all the people who need later abortion. This was before the draft decision leaked, and of course we feel a much greater sense of urgency now that the abortion landscape has changed so dramatically. 

The existing all-trimester clinics have significant waiting lists (four to five weeks at some clinics) and what this means, in practical terms, is that there are a significant number of people who just won't get the care they need. We are so fortunate in Maryland to have enough legislative support to allow us to provide evidence-based care in a welcoming environment. We are able to see patients in all trimesters because our state recognizes that abortion is normal healthcare that needs to be accessible.

Follow Reina Sultan on Twitter.

Correction: An earlier version of this story inaccurately referred to both of Arizona’s abortion restrictions as trigger bans. VICE regrets the error.

]]>
3addmvReina SultanAmy Rose Spiegelabortionreproductive rightsroe v. wadeDobbs v. Jackson Women’s Health Organizationdobbs decisionabortion bansWhat It's Like
<![CDATA[The Dire Consequences of Overturning Roe v. Wade, One Month Later]]>https://www.vice.com/en_us/article/3add8b/roe-v-wade-overturned-impact-abortion-rights-reproductive-healthcareThu, 28 Jul 2022 13:00:00 GMTSince Roe v. Wade, the 1973 ruling that legalized abortion across the nation, was overturned by the Supreme Court just over one month ago, there have been medical emergencies, guttural screams, celebrations, legal battles, and… emails. A lot of emails.

Laurie Bertram Roberts has been on the receiving end of plenty of them, mainly from people wanting to give money. Bertram Roberts helps run an abortion fund, The Mississippi Reproductive Freedom Fund, which aids people in paying for abortions and related costs. The fund has received an outpouring of support since the decision in Dobbs v. Jackson Women’s Health Organization gave states the power to limit or straight-up ban abortions.

Bertram Roberts has been doing this work for over a decade (and predicting the fall of Roe v. Wade for much of that time), and they worry the emails and donations will only keep coming for so long before the attention wanes. They’ve seen waves of supporters from blue states passionately rallying around an issue like abortion rights when a threat to access is nigh, only to abandon ship for another cause when the news cycle changes. Although Bertram Roberts says they’re incredibly grateful for the crucial support their fund has been receiving, they worry the contributions and well-wishes will only last so long. Bertram Roberts compares vying for allies' attention to dating “fuckbois” who are everything you need one day, but out the door the next. “They love you today, but tomorrow, they’ll leave you for climate change,” Bertram Roberts said.

Meanwhile, in a world where 26 states are expected to ban or limit abortion, if they haven’t already, Bertram Roberts’ biggest fear is that limited access to abortion is already becoming too commonplace. That people are shrugging and moving on as though abortion access has always been so constrained (to be fair, politicians have been restricting abortion for years, especially since the 2010 midterm elections) and as though there’s no use fighting them. “I already hear people normalizing people traveling these great distances to have an abortion,” they said. Although self-managing an abortion through pills (which can be obatined without a provider — for example, you can buy them online through a platform like Aid Access) is still a generally safe, cheap and effective way for many people to have abortions up to about 12 weeks in pregnancy, the option isn’t fit for everyone, medically or generally. There are also worries of future criminalization, which leaves some people in the lurch with only the option to travel.

Trying to quickly sum up all that’s happened in the chaotic 30-some days since Roe v. Wade was overturned—to hear all the stories of people who couldn’t get access to abortions, of those who had to jump through hoops to get life-saving medical care, who lost their jobs, fought against a ban in court, or who feared prosecution after self-managing an abortion—would strip the stories of the nuance they need. Instead, we asked a few people within the movement what they’ve seen on the ground since the Roe reversal—and why they believe we can’t abandon the fight.

What’s happened at abortion funds since the Roe v. Wade Reversal?

On July 6, Jackson Women’s Health Organization carried out its last abortion. The Mississippi clinic—which was at the heart of the case that reversed Roe after the clinic challenged a Mississippi abortion ban—is now closed for good. Bertram Roberts said the official closure was one of the most challenging days they’ve faced in the past month. “There’s so much grief, and I don’t mean just grief, I mean grief,” they said.

There had been reports in the media and on social media that the clinic “was about to close” for years. Because of that drumbeat of misinformation, some Mississippi residents already thought it had shuttered. “For some people, it didn’t change anything,” Bertram Roberts said. “But then what did change was, Oh, no—now there are no clinics in Memphis. Now there’s no clinics in Little Rock.”

Another shift: Since Roe’s fall, the Mississippi Reproductive Freedom Fund has fielded calls and chats from a new group of people needing abortions, whom they hadn’t heard from before: “People who have a little higher income, who would have been able to make it to Jackson, but they can’t make it to Atlanta without help,” Bertram Roberts said. (In a fact-checking call, Bertram Roberts said they actually would no longer send abortion fund clients to Georgia, due to the six week ban that went into effect last week. Now, they’re most likely to help folks travel to Illinois, showing how options are disappearing by the week.}

And there are the people the fund hasn’t been able to help for myriad reasons—minors with unsupportive parents who can’t get out of school to travel, people with disabilities, caretakers, those with inflexible work schedules, or people with abusive partners. “We’ve already had callers who—it doesn’t matter how much money we have available—they’re not going to be able to go,” Bertram Roberts said. “It’s too far away, they can’t be away that long… There’s really nothing else to say but, ‘I’m sorry and we’re here to support you, whatever your next step is.’ We virtually handhold.”

Meanwhile, at funds like Bertram Roberts’, supporting those who need abortions often has to take precedence, even over processing donations, especially after such a hectic past month, Bertram Roberts said. This brings us back to the emails. Bertram Roberts said their inbox has requests from people wanting to give money from a month ago that they haven’t gotten to yet. “We’re asking for people’s patience because I know people think we’re ignoring them, and we’re not, but we just have to triage what we get to in a day,” Bertram Roberts said. “That even includes people offering us money… We [have been] working on abortion requests or media requests that were time-sensitive first before [getting] to even money emails. Which sounds absurd, because we need the money.” Bertram Roberts estimates the fund has received double the typical support since Roe’s reversal.

Meanwhile, Bertram Roberts is constantly consulting lawyers about how the Mississippi Reproductive Freedom Fund can help people post-Roe. What can and can’t they fund now? For years, they’ve helped lower-income folks pay for abortions and associated costs like gas, planes, hotels, childcare, and food. In this new world, are they allowed to provide possibly life- and definitely dollar-saving information about how to self-manage abortion?

“We’re not ending our services in any way,” Bertram Roberts said. “We might have to change them, but we’re not closing.”

Not every fund in the U.S. has been able to adapt. “We have made the deeply difficult decision to temporarily pause our services for the safety and security of our clients, our supporters, and our staff,” The Yellowhammer Fund wrote in an email announcement. “During this time, we will consult legal experts to reassess how best to continue doing our work in the immediate future.” (The Yellowhammer Fund, which had been known for helping folks who needed abortions in the Deep South, has not responded to email and phone requests for comment from VICE.)

At least seven funds in Texas have reportedly been shuttered due to the legal risk of “aiding and abetting” abortions. Right as folks need additional support the most, some funds are being forced to stop giving it to them.

What have doctors seen since the Roe v. Wade reversal?

Dr. Bhavik Kumar, MD, an abortion provider in Texas, has noticed an uptick in harassment from anti-abortion protesters happening outside of the Planned Parenthood Center for Choice where he works in Houston. “The shouting, the things they’re saying, just feel more aggressive than usual, more intense,” Kumar said. “It just seems like they feel they have more of a right to be there now.”

Kumar said he and others walking into the clinics receive “threats to report us to the state. [Demonstrators are] telling us we don’t need to work here, [and that we are] killing babies. They're videotaping us, including our license plates, [and] misleading our patients and increasing their anxiety.”

This kind of intimidation isn’t new for the clinic, but the fact that protestors keep showing up to the Houston center is almost ironic: The center hasn’t performed any abortions since Roe fell. As soon as the decision came down, they halted any abortions they had still allowed to carry out under SB 8, a Texas law that went into effect on September 1, 2021 that effectively banned abortion after six weeks.

The health center team didn’t continue abortions in the brief period of access after a lower court judge blocked a pre-Roe abortion ban from going into effect in Texas (a decision which was swiftly undone). “We chose not to provide [during that small window,]” Kumar said. “Given the intense way that pre-Roe law was written 100 years ago, and given the pattern of behavior from our attorney general, Ken Paxton, and his ruthless, relentless attempts to target folks that provide abortions and to try to ban everybody from accessing it, we were hesitant to move forward and provide that care at that time.”

Physicians like Kumar are in a unique position: They’re most commonly the people who are actively punished by the law when state abortion bans go into effect. “You’re thinking about multiple lawsuits, about losing your medical license, about ultimately going to jail for providing health care, and it’s very, very scary to think about that,” he said.

The impact on people who need abortions is sometimes harder to quantify than years of jail time abortion providers may face, though the famous “Turnaway Study” out of the University of California, San Francisco, is a good start. The long-term research, which began over a decade ago, found that those who were turned away from abortion clinics and who carried pregnancies to term instead were four times more likely to end up living below the federal poverty line than those able to have their abortions. Those who were denied a wanted abortion had worse health outcomes and serious complications with their pregnancies, such as eclampsia and death. They were also more likely to stay connected to abusive partners.

Kumar added that the Dobbs decision now in effect is having a chilling effect on access to all kinds of health care. Abortion bans like the one in Texas are typically vague as to what kind of emergency care is and isn’t allowed. The laws and their language can be murky, and they’re often not tailored to modern medicine. Doctors don’t know for sure if they can be punished for even providing resources to someone who needs care, like information on self-managed abortion.

How have abortion bans impacted real people since Roe was overturned?

There are already too many examples of confusing laws leading to devastating outcomes playing out across the country just in the last month.

One person with a life-threatening ectopic pregnancy reportedly had to travel across state lines to the University of Michigan Hospital because doctors where they lived worried that they could be sued if they provided care to the patient because a fetal heartbeat was present. (In response to a request for comment, the University of Michigan Hospital’s OB/GYN team confirmed: “We have seen patients with ectopic pregnancies referred from other states because of restrictions on abortion care. We cannot provide further details due to patient privacy.”)

In Wisconsin, the Washington Post reported that a woman bled for 10 days after an incomplete miscarriage. The staffers in the emergency room treating her wouldn’t remove fetal tissue due to the confounding state of abortion laws.

As was widely publicized throughout the country, a 10-year-old rape survivor from Ohio had to travel to Indiana for abortion care.

These are just a few examples of so-called “exceptions” to abortion bans (some abortion bans make exceptions for rape, incest, and life-threatening medical issues, but these caveats to bans are not always practical in effect; proving the that you are the exception to the rule is often laborious and emotionally taxing, if not impossible) that made national news. Abortion can be life-saving or life-changing no matter why you need one, advocates like Bertram Roberts said, whether or not you’re having a medical emergency, and no matter where you live. “The impacts [of Dobbs] are still unraveling,” Kumar said. “Stories will continue to come out, and I think, unfortunately, they will become more intense and serious. In time, we’ll start to see more statistical differences in maternal morbidity and maternal mortality… We already see that maternal mortality is higher among folks of color, specifically among Black women. We’re going to see more Black and Brown people dying because of the bans on abortion.”

As we look ahead to the coming months—whether or not we keep donating to abortion funds and sending angry emails and yelling about abortion rights—Kumar said that every day, real people will be impacted. They’ll keep coming into emergency rooms. Keep continuing unwanted pregnancies. And, the sad truth is, the more all this happens, the more commonplace these stories will become. As Bertram Roberts says, the more bans and restrictions are put in place, and the more exhausted people get, the more this will become, yet again, our “new normal.”

Follow Molly Longman on Twitter.

]]>
3add8bMolly LongmanMatthew SchnipperAmy Rose Spiegelabortion accessabortionThe Southroe v. wadeReproductive Justicedobbs rulingreproductive rightsDobbs v. Jackson Women’s Health Organization
<![CDATA[988 Has a Transparency Problem]]>https://www.vice.com/en_us/article/g5vq97/988-national-suicide-prevention-lifeline-not-cop-freeMon, 25 Jul 2022 17:34:09 GMTSince George Floyd’s murder and the uprising that followed in June 2020, the demand by abolitionist activists and mental health advocates to remove police officers from mental health crisis intervention—especially from the response to mental health-related 911 calls and suicide hotline calls—has intensified. The federal response to those demands launched nationally on July 16: 988 Lifeline, a crisis call line designed by the Substance Abuse and Mental Health Services Administration (SAMHSA) that provides an alternative to 911 for people experiencing mental health crises, especially suicidality.

Accessing 988 Lifeline is purposely simple—as easy as dialing or texting 9-8-8. From there, callers are routed to a trained crisis counselor local to their area code who is part of the Lifeline network. The call lines and organizations who have opted into that network all have one thing in common that caused near-immediate backlash to the initiative: Contractually, they are all obligated to call 911 under certain circumstances without informing the caller on the other side of the phone.

A representative from SAMHSA told VICE that 988 crisis counselors contacted 911 without consent for “less than half of 2 percent” of its annual callers, and only when said caller was “unwilling or unable to take actions to remain safe,” in scenarios like “active suicide attempts (overdoses, etc.) and/or stated intent to use weapons or other lethal means with the intent to cause imminent harm or death.” 

The Trevor Project’s director of advocacy and government affairs, Preston Mitchum, responded to critiques of the 988 launch in an Instagram statement that said callers do not need to share their location or any personal information with 988 crisis counselors. “For the past year, I have worked on 988,” Mitchum wrote. “I don't pretend that 988 is perfect. It is created within a system that we have yet to see. While criticism is valid, it should be honest. Yet, I have seen a lot of misinformation.”

However, investigative reports from Mad in America found a continued practice of non-consensual call tracing by SAMHSA’s National Suicide Prevention Hotline. It is unclear if those practices have been amended with the launch of 988, and they’ve never been publicly disclosed or discussed by the agency in a caller-facing forum. SAMHSA did not directly respond to VICE’s questions about its use of geolocation surveillance to direct cops or emergency services to their callers. (Update: In a statement, a representative for SAMHSA told VICE, “988 does not currently use geolocation.”)

There are many well-publicized stories about what can happen when cops and people in mental health crises collide. Cops in Salt Lake City, Utah’s police department shot Linden Cameron, a 13-year-old child, after responding to a 911 call from Cameron’s mother in 2020; Springfield, Oregon police officers killed Stacy Kenny, a trans woman reportedly diagnosed with paranoid schizophrenia, in 2019 while she was on the phone with a 911 operator

According to a report by the Washington Post, cops shot and killed 178 people between 2019 and 2021 in response to calls for help with a mental health crisis—and that’s the number of documented cases. Yana Calou, director of advocacy at Trans Lifeline, a non-profit peer and crisis hotline, said the hotline’s crisis counselors never contact 911 without explicit caller consent, which is why they are not a part of 988 Lifeline’s partner pool. Their concern is that 988 Lifeline and its partners don’t share the same policy. “I have so much respect for the people working to create this system,” they said. “I do really think it is a great opportunity to expand resources to people in need. But there are these problems with it that are really, really long-term.” 

As part of Trans Lifeline’s #SafeHotlines campaign, launched the same day as 988 Lifeline and partially in response to an anticipated uptick in 988 Lifeline calls, the organization created a Crisis Callers’ Bill of Rights. Calou said the section around transparency is especially relevant to their concerns about 988 Lifeline: demands for “clear and upfront information about which situations hotlines use police and emergency services—to be included on websites, apps, chatbots, and greeting/hold recordings, including geotracking,” along with information about what could trigger a police/EMS response and when one has been triggered. 

“[988] is taxpayer-funded, so we should actually know what we're getting when we call, what the policies are—not have that buried on page 65 of your terms of service or privacy policy,” Calou said. (Update: Currently, 988’s “imminent risk” policies, which include police intervention, are linked on a drop-down menu on its FAQ page titled “Does Vibrant use police intervention for callers, texters, and chatters to the Lifeline?”)

At the core of those concerns is the sickening possibility that callers don’t know a call to 988 could lead to a visit from the police or emergency medical services, leading to arrest, detention, involuntary hospitalization, or worse. “People know the number for 911, and they made a different decision in the moment to call the crisis hotline,” they said. “We should be able to determine what supports and care we utilize and which ones we refuse in order to be able to protect ourselves from further harm.” 

Calou cited the financial burden of an unexpected ambulance ride or hospital visit for an uninsured caller; the fallout from 72 hours in jail on a caller’s employment or child care situation; and the trauma and potential for injury or death during an unexpected, unwanted police encounter as possible outcomes from non-consensual crisis intervention. 

“One of the big things [for trans people] is that an involuntary psych hold in your medical history can be used by other medical providers to deny us the ability to give informed consent for life-changing trans health care, like surgery or hormones,” they said. Obviously, these aren’t intended outcomes of 988 Lifeline’s emergency intervention policy—but Calou said that a lack of consistent transparency means they remain all-too possible.

John Palmieri, acting director of SAMHSA’s 988 and Behavioral Health Crisis Coordination Office, told VICE in a statement that, of the “fewer than 2 percent of calls to the 988 Lifeline require an emergency response, most of those are done with the consent and cooperation of the caller… Those who contact the 988 Suicide & Crisis Lifeline can expect compassionate, accessible care and support for their mental health-related needs—whether that is thoughts of suicide, mental health or substance use crisis or any other kind of emotional distress.”

Still, Calou worried that the uptick in publicity around 988 Lifeline will cause the number of callers who involuntarily come into contact with cops or EMS to rise. “There's a big problem when there are Reddit forums and like Quora boards about how to call a suicide hotline and [not have the police or EMS called on you],” they said. “You're trying to offer somebody a service, and the people that you're actually trying to help are trying to figure out ways around you.” 

Correction: An earlier version of this article stated that Linden Cameron was fatally shot by police. He survived his injuries. The original story also contained an incorrect location: Stacy Kenny died in Springfield, Oregon, not Springfield, Ohio. We regret these errors. This story has been updated for accuracy and clarity.

Katie Way is a senior staff writer at VICE. Follow her on Twitter.

]]>
g5vq97Katie WayAmy Rose SpiegelmindTrans Lifeline988 lifelinemental healthsuicidal ideationsamhsacrisis interventionpolice violence
<![CDATA[What It's Actually Like to Have Monkeypox]]>https://www.vice.com/en_us/article/dy7vmk/what-its-like-to-have-monkeypoxThu, 14 Jul 2022 20:25:17 GMTFor more information about monkeypox diagnosis and treatment, visit the World Health Organization (WHO). Testing is available through Aegis Sciences, Mayo Clinic LaboratoriesLabcorp, and Quest.

Monkeypox cases are surging across the globe. As of July 14, there are more than 10,000 confirmed cases in 59 countries that have not historically reported monkeypox, according to the Centers for Disease Control (CDC). Scientists are still debating whether or not monkeypox is airborne, but we know for sure that it can be spread through direct contact with bodily fluids or the lesions that are typical of the illness, including contact with clothing or linens that have touched someone’s infectious area. While early data has shown that men who have sex with men have, thus far, been disproportionately affected, it’s worth noting that monkeypox can be transmitted to anyone through any kind of close contact and is not currently classified as an STI, since infection can occur from non-sexual contact. 

While the spread of monkeypox is absolutely a cause for concern, the good news is that it’s not fatal for the vast majority of people affected. The World Health Organization reported in June that only one death had been recorded of the 2,103 cases globally that had been reported in the first half of the year. Symptoms can include fever, headache, muscle aches and backache, swollen lymph nodes, chills, exhaustion, and, as you’ve probably seen, small lesions that look like pimples or blisters. Not everyone presents with every symptom, though, and just as with every viral infection, different people can react very differently to the virus. 

But data and lists of symptoms don’t necessarily give any insight into what the actual experience is like. As one monkeypox survivor said, the ailment can be painful and isolating—not to mention psychologically taxing. To put a face to the numbers, VICE interviewed Scott McDonald, a 31-year-old London-based cruise ship dancer, who is recovering from monkeypox and was cleared to exit quarantine the day we spoke. 

When did you first start hearing about monkeypox?

I first started hearing about monkeypox in May or June. I was still working on the ship. I was seeing news articles about it, and I was like, Oh, not something else... I was just looking forward to my summer freedom—I had been on the ship for six months and was really excited to go to Sitges, which is about half an hour away from Barcelona, for their Pride. It’s this gorgeous seaside town that has loads of gay bars and gay beaches. I was thinking, If it ruins that, that would just be the worst, because I’ve been looking forward to this one thing. I also worked as a nursing assistant in a hospital in intensive care with COVID patients, so I maybe took it a bit more seriously than my friends who just wanted to say, “Hey, can we just enjoy ourselves?” I was aware of it, but not necessarily enough to change my plans. I did go, and I had an amazing time.

Can you describe your general timeline of symptoms?

I was in Sitges from June 9 to 16. Sometime the next week, around Tuesday, I felt slightly under the weather. I wanted to take a nap, and I never usually take naps. I felt a bit of a mild fever. I was looking at more information online, and it was talking about enlarged lymph nodes in the groin. And then I noticed: Oh, actually, there’s something there. I was joking with my friend that I just did [a YouTube squat workout] for the first time ever, so maybe it was, like, I pulled my leg muscle. Because you’re just thinking about everything that it’s not. It’s the same with COVID, where you’re like, Oh, no, it’s just a cold, even though you know that it could be COVID. The average time for people to start seeing symptoms after being exposed to monkeypox is six to 16 days, but [health officials] kept mentioning a rash, and I never got that, so I was like, No, no, it’s fine. I went to see a friend one day and another friend the next day because I had been away from everyone for so long, which was really annoying for contact tracing because I had seen so many people. 

When did you decide to get checked out for monkeypox?

I noticed that I had a separate little lump on my anus, and I was like, OK, so I’m gonna get this checked by Sexual Health Services, right? because that could be a number of things, and I’d just been to a big party. But the health service was quite stretched, so I couldn’t get through on the phone until Wednesday. They said that they could bring me in for an urgent appointment on Friday, June 24, so it was still two days away. 

At my appointment, they had a look at everything, took a swab directly from the lesion, and then they said that the cases were rising in London, so they had been instructed to treat everything as monkeypox until proven otherwise, in terms of things like herpes, syphilis, and things that usually look similar. They told me to isolate until they had the results, but the results could take three to four business days. It actually ended up being four to five business days, so it took some time. 

How did your symptoms develop?

In that time period, I got a spot on my face, on my hand, on my foot, and in places where there wouldn’t usually be spots, like the bottom of my foot and the top of my foot. So then I started to isolate more seriously, and I got the positive result. I just kind of had to ride it out, but by that point, the worst was over. I never got a really bad fever or really bad fatigue or anything like that. 

For me, genuinely the worst symptom was the lesions. My first lesions were on my bum, and those were the most painful ones. I couldn't even sit down. It was really painful for several days. I was taking painkillers all day, and then I’d wake up in the night in pain because the painkillers had worn off. But then that wore off, and all these ones that appeared elsewhere just on their own weren’t painful or anything. It was just really kind of frustrating and boring, because you just have to wait for them to heal and then they have to scab, and the scabs have to drop off with new skin formed underneath until you’re deemed not infectious anymore. They looked like little red spots at first, like I had just gotten acne, but then they changed to look more like the characteristic lesions you see in pictures, like a donut shape with white pus in the center. It’s kind of like a Cheerio or Froot Loops, but much smaller—about half a centimeter [in diameter]. 

When did you get cleared to exit quarantine and how long did it take to get to that point?

I still have slight lesions, and I’ve been told to avoid children under 12 and pregnant women until they’re fully healed. But [health officials] deemed that I can come out of isolation and just cover up. The guidance they sent me for coming out of isolation was that I couldn’t have had any new lesions in the past 48 hours, I had to have no fever for 72 hours, and then all your remaining lesions should be scabbed over. The painful symptoms probably only lasted about seven or eight days, and it’s been about two weeks for me at this point. 

Did you experience any symptoms that you didn’t expect to?

Even though the physical symptoms cleared, the mental symptoms stayed in terms of the frustration over something that looks so harmless. It’s literally a spot, and you’re like, That could spread to someone else, and then they’ll have to go through the painful bit that I went through. I had to call my mom and then she couldn’t go to her granddaughter’s birthday because monkeypox poses a higher risk to kids. The mental impact was more than I would have expected from something like this. This was something that carried the shame or the stigma of an STI, but then has to be made public to your friends and family, because you could also pass it on to them.

What would you say to others, especially in the LGBTQ community, who are at risk of monkeypox? 

Everyone needs to be keeping up to date with the information, because it’s changing so much. You should know that literally one spot that’s in a weird place could be monkeypox, so everyone should be hyper-aware and getting stuff like that checked out. If we’ve learned anything from AIDS, seeing how that started, and how much damage was done because of stigma, the greatest thing we can do to honor that history is to be responsible and do our research on what to look out for.

Follow James Factora on Twitter.

]]>
dy7vmkJames FactoraNico LangLGBTQdiseaseMonkeypoxvirushealth careHealthCDCoutbreakdisease controlinfectious diseases