#Herpes, #Crohns, and #Depression: Meet the People Making Their Chronic Illnesses Instagram-Friendly
Instagram has become a platform for those living with chronic conditions to share updates and raise awareness. What is the healthiest way to tell all?
Late last month, Theresa Eternity took a selfie. It wasn’t out of the ordinary for the 22 year-old from Victoria, Canada, who frequently catalogues her many hair colors (pink, blue, green) on Instagram. But this photo was different: sporting a houndstooth blazer, crimson red lipstick, and fully bald head, Eternity announced to the world that she has alopecia.
“It’s pretty vulnerable when you can’t hide behind your hair, you’re there for the world to see,” Eternity wrote in an accompanying caption. “Sometimes I open my front camera and I look just like a thumb... but that’s okay, because I’m learning and changing what femininity means to me.”
Eternity punctuated her 150-word disclosure with 13 hashtags, including #alopecia, #alopeciaareata, and #bigbadbaldie. She joined over 750,000 people (and probably more than a few bots) who have used #alopecia to classify a confessional post. These communities of patients inspired Eternity to share her own story.
After visiting multiple doctors who ran tests for everything from thyroid disease to iron deficiency, Eternity was diagnosed with alopecia areata. In medical circles, the chronic condition—which causes hair to fall out in patches—is considered more of a cosmetic nuisance than a health crisis.
“They were lax in sympathy and empathy,” Eternity told The Daily Beast. Her physician unceremoniously ended the appointment by suggesting she see a dermatologist. Not satisfied, Eternity turned to Instagram support groups where she found a community that understood her pain.
“It was a huge weight off my chest once I was able to see people my age with [alopecia], still living a normal life, going about their days, having partners, great jobs, and all of that,” Eternity said.
When she got tired of picking out clumps of hair from her bald patches, Eternity decided to shave it all off. One morning, while watching The Good Place on Netflix, her boyfriend took an electric razor and buzzed in sections, strip by strip.
Two weeks later and sporting some dark fuzz on her head, Eternity published her photo. She hoped that other women in her position, up late and sifting through hashtags, might take some comfort in it.
“If I was able to showcase that alopecia is normal and it can happen to anyone,” Eternity explained, “maybe [my post] will help make someone else’s experience just a little bit easier.”
The famous five stages of grief—denial, anger, bargaining, depression, and acceptance—might require a sixth step: public Instagram disclosure. Oversharing, that hallmark of internet culture and a holdover from the days of ubiquitous personal Wordpress blogs and Facebook rants, has hit Instagram.
Search #Crohns on Instagram, and you’ll find 390,000 posts. #Depression yields more than 18 million results. Even one of the most stigmatized illnesses in existence, #Herpes, has been shared around 120,000 times.
“When you live with a chronic condition, so much of life is out of your control,” said Dr. Gary McClain, a New York-based therapist who specializes in treating patients reacting to a recent medical diagnosis. “One of the areas that you do have control of is how you chose to communicate around your condition.” For some, that might mean informing every single Instagram follower.
When Emma Illingworth was diagnosed with Crohn’s, an incurable inflammable bowel condition, at just 17 she was heartbroken. “I felt like my life was taken away from me,” Illingworth, now 21 and a private music teacher in Leeds, England, wrote in an email. About a year later, she wrote an Instagram post explaining her diagnosis.
“I thought about whether I should open myself up to a bunch of people who probably wouldn’t even care, but once I began writing, I just couldn’t stop,” Illingworth explained. “I guess sharing is like therapy for me. It helps me explain why I struggle and gives me an outlet for the pain I bottled up for so long.”
Illingworth’s feed looks similar to that of most twentysomethings: still lifes of lattes and photos of well-lit cafes abound. Anyone who ignores captions on selfies that read, “Always fun stressing doctors out with the weird things my body does,” would never know about her Crohn’s.
Stephanie M. Andrews, 31, lives with lupus, a particularly brutal disease in which the immune system attacks itself. Over the eight years since her diagnosis, Andrews has lost part of her hair and dealt with painful flareups, which she documents online.
But Andrews, who works as a realtor and pharmacist in Dallas, refuses to let the condition define her life. Two days before she shared an image of her receding hairline, she posted a photo lounging on top of a pool float, writing about how she was “floating through the week.”
“I say this as humbly as I know how: I don’t look like lupus,” said Andrews. “If you come to my page, you’re going to be uplifted, like, ‘Dang, she has lupus? She’s out here.’”
Andrews certainly isn’t asking for sympathy through her posts, though some who pepper in a #lupus might be. Like many autoimmune issues, lupus ebbs and flows; a patient might appear healthy one day, but struggle to leave their bed the next morning.
Lauren Metelski, a nurse education manager at the Lupus Foundation of America, hopes that those who are explicit in their details of living with the disease might educate the public on a poorly understood topic.
“People think that those with lupus are not sick because they don’t look bad,” Metelski said. “But that’s because they don’t leave the house when they’re sick. When people with lupus do leave the house, it’s because they pulled themselves together enough to do so.” In Metelski’s eyes, every publicized loss of hair or face rash can help spread awareness of the disease.
But for Andrews, some of the unrelenting confessionals seem gratuitous. “With lupus, it’s so easy to be super-sad all of the time,” she said. “Sometimes I’ll look at other people’s posts and think, ‘Bro, perk up.’”
In 2015, Emily L. Depasse was a recent college graduate and aspiring sex therapist. After experiencing some vaginal pain that made even walking difficult, she visited an OBGYN. Upon examination, the doctors told her she had herpes, which a swab and blood test later confirmed.
“I had a lot of dark nights at 2 AM Google-searching,” Depasse said. “At one point, I signed up for a dating app for HSV positive people. I tried it and I felt like, this can’t be it. There has to be more to life and dating that this website.”
After a few months later, Depasse, now 26 and a graduate student in Philadelphia, took to Facebook to tell friends, family (and a handful of old high school teachers) that she had herpes.
“Many of my friends advised that I should not publicize this because it cannot be taken back,” Depasse’s post began. “But herpes cannot be taken back, either.”
The support she received from her post was enough to encourage her to keep speaking about her disease and STI prevention online, though not all were enthused. “I had some family members say, ‘Less Carrie Bradshaw, more Jackie Kennedy,” Depasse said.
Despite that, four years later Depasse has amassed a niche following of those looking for solidarity in their diagnosis. Her page mixes Instagram aesthetics like inspirational quotes and Sex and the City memes with information about the HSV virus and suggestions for how to support a friend who has just been diagnosed.
“I try to combine sex education and beauty, and I like to contrast between darkness and light,” Depasse explained. “All of my captions are very intentional, inspired by things I hear or experience. It’s an extension of everything I wanted to hear, see, or read when I was diagnosed.”
Her candidness comes with some perks—Depasse has earned $100 for a sponsored blog post, and she has an upcoming partnership with the vaginal wellness company Momotaro Apotheca.
She usually has around 25 unread DMs a day, mostly coming from HSV-positive people. Depasse is making the kind of impact she hoped to, helping those in the throes of post-diagnosis panic, though perhaps she has come off a little too supportive at times.
“A woman sent me a picture of her vulva on Facebook messenger last year,” Depasse said. “Part of me understands the desperation, because I seem non-judgemental [online]. But that’s not something I want in my inbox.”
Her Instagram page now features a series of highlighted stories, labeled “Disclaimers.” One gently requests that people not send pictures of their genitals.
People say they post about their illnesses online to both raise awareness and prove that there is reason to stay positive. But if they post solely about their experiences in doctor's offices or on medication, they could risk crafting an online brand that revolves solely around their conditions.
“I had a client come in for our first session and she introduced herself as, ‘Hi, I’m HIV,’” Dr. McClain recalled. “I said, ‘Hi, I’m Gary.’ We had that discussion—your diagnosis is just a slice of the pie, but you are a very big pie. You don’t have to make your condition all that you are, or allow other people to do that.”
But Kimberly Rolfs, a 24 year-old New Yorker who has made a web series about living with borderline personality disorder (BPD) and frequently posts about her mental health on Instagram, finds comfort in such openness.
“My favorite thing is when people come up to me after hearing about the show and introduce themselves by way of their mental illness,” Rolfs said. “‘Hi, I’m bipolar,’ helps people get past the small talk elements of a relationship. Since I put so much of myself out there, people are more willing to talk to me about their real stuff.”
Alison Stone, a New York-based therapist who treats young adults facing life transitions, suggested that posting online can be therapeutic—but it's not a quick fix.
“Sharing news of a condition on Instagram might be useful and beneficial in that it can connect you to other resources and people, but perhaps it's best to think of it as a supplement to therapy, or one aspect of your overall healing process,” Stone said.
For Rolfs and others, posting about the banalities that come from living with an incurable illness—the self-loathing, the days when leaving the house feels like a challenge—can live alongside Instagram staples like snapshots of brunch and nights out with friends.
“The thing that I have to say about BPD is that it’s possible to live a life that is rounded and full and does not center around mental illness,” Rolfs said. “I don’t want it to ever seem that there is nothing normal about my life.”