The Dangers of “Sickstagram”
My diagnosis is no secret among people I know. I am “the Ehlers Danlos girl.” As such, I’ve had many friends reach out to me asking me to advise their friends who’ve just received a diagnosis. Truthfully, I don’t enjoy doing this. I don’t have my shit together and even almost fifteen years after being diagnosed, I am still coping poorly. I am always willing, however, to offer a singular piece of advice.
Do not join Ehlers Danlos groups online. Do not join the “Sickstagram” community.
I understand the urge to do this. You want to be educated about your disease, understand what your new normal is. You want advice and comfort. You’re looking for someone to answer your pressing question; “Well, what do I do now?” You will not get answers from diving into these groups. When I had to “retire” from the workforce after becoming too disabled to work at 20 years old, I was desperate for community. I watched all my peers continue to live normal lives and I felt completely alone. I looked up #ehlersdanlos on Instagram and started following several of the most popular accounts. Here’s what I learned.
1) These “Sickstagram” (the chronic illness Instagram community) influencers, also known as “sickfluencers,” were decked out with basically every medical device and procedure on the market; $10k electric wheelchairs, brain surgeries, home medication infusions, ports, catheters, feeding tubes, SSI, dozens of daily medications. “Holy shit,” I thought to myself. “This is my future. This is what a future with EDS looks like.” I envisioned a horrible life, an endless expanse of suffering in which the only thing to look forward to is your next surgery.
For someone who is newly diagnosed, this is devastating. I have seen people newly diagnosed join Sickstagram and begin telling people within a week that their disease means they’ll have to have a feeding tube one day (it doesn’t). I don’t fault these people at all. They have been given every reason to believe that. If you scroll through #gastroparesis (a co-morbidity of EDS that causes stomach paralysis) on Instagram, that’s ALL you’ll see. They were never given any actual information or expectations set by doctors to compare it to.
This idea that your disease is going to consist of every possible worst-case scenario will destroy you. Period. What I know now is that, for the overwhelming majority of people with EDS, these are not accurate depictions of life. This comes down to the very nature of social media. In 2022, I think many of us are beginning to realize social media is a “highlight reel,” and it’s both unhealthy and unrealistic to compare ourselves to others’ lives on these platforms because we’re only seeing the best, most curated parts. For Sickstagram, however, the opposite applies. We are only seeing the sickest people and, for the most part, we are only seeing their worst days. Most people with EDS, who although do certainly have struggles, live relatively normal and fulfilling lives with accommodations and adjustments. They just don’t have dedicated Instagram accounts to their disease, so it’s easy to forget they exist. But I promise you, they do.
2) You will get bad medical information and advice. Frequently. These influencers are just regular people with no professional medical training whatsoever. They often have doctors, uninformed about EDS, who perform incredibly dangerous and dramatic surgeries and procedures as a first line of treatment. These should absolutely not be considered standard treatments. For example, I followed a lot of POTS (Postural Orthostatic Tachycardia Syndrome, an autonomic nervous system dysfunction that causes heartrate and blood pressure issues) pages on Instagram. The big “influencers” all have ports (an implanted device in your chest most commonly used by cancer patients) and at-home saline infusions. “Ok, this is what POTS is,” I thought. When I was looking for treatment, I went through my local EDS Facebook group and found a doctor in my area that was highly recommended. I went in for a consultation and he tentatively confirmed that I did have POTS. He wanted to try a saline infusion to see if it helped my symptoms. I will never forget what he said next. “If this works, we’ll start the process to get you a port and a home health nurse.” This was my first appointment. I had known this man for 45 minutes. I hadn’t tried a single medication for symptom management and this man was suggesting a port, which requires an invasive procedure and carries a high risk of sepsis and DEATH. And I thought this was completely normal; even more, I was thankful! I thought, “Finally, a doctor who actually knows about the disease! This is what I’ve been looking for all along!” I am so grateful every single day that I ended up switching to another doctor (for unrelated reasons), who did not even consider continuing that course of treatment. Seven years later, I take a single pill every day that has massively reduced my symptoms and hasn’t given me a single side effect. I never would have known this was even possible if I’d gone straight to the most extreme available treatment, which I truly believed was the only progression.
You will begin to believe that everything that happens in your body is a symptom of your disease. Everything becomes pathologized. Someone in your EDS Facebook group will ask “I get ingrown toenails sometimes, is this an EDS thing?” Dozens of people with comment “Oh my god, me too! I never considered this!” Most likely, they are not related. Sometimes things happen in your body that are not related to EDS, they’re just normal parts of living in a human flesh prison. Pathologizing every sensation that your body experiences isn’t going to do anything but make you an incredibly anxious person. I lived like this and truly, it was hell. If I got hemorrhoids, I was certain it was going to lead to anal prolapse. If I was nauseous from eating too much Taco Bell, I knew it was because my stomach was failing and I was months away from needing a feeding tube. I obsessed over EVERYTHING I felt, certain that it was a new symptom and that it needed to be constantly monitored. Needless to say, my asshole is still very much inside my body and I just eat less extreme quantities of burritos now and feel pretty much okay.
3) It is too easy for your illness to become your identity. When you join and start posting in these communities, EDS becomes your “brand.” It’s what surrounds you constantly. All your online friends have EDS. It’s all you post about because you are an awareness and lifestyle account. Again, this is just how social media works. The more you post about something, the more the algorithm recommends that kind of content; before you know it, you’re in an EDS echo chamber and you’ve forgotten there’s a real world outside of it. It becomes all-consuming. This happens so easily in the early stages after diagnosis. Your disease IS a huge part of your life, but it isn’t everything. You were, are, and always will be more than a diagnosis.
I reached a point where I realized that every time I opened Instagram, I was filled with dread. I was constantly comparing myself to other sick people and the only things I saw and read all day were stories of absolute misery. I felt more alone than I ever had. One day, I unfollowed every chronic illness account I could and even blocked a few. I worried that I’d feel even worse without anyone online that I could relate to; but for the first time in months, I felt like a regular person again. Because I am. I am a regular person with a disability. I have joy and sadness and excitement and disappointment just like everyone else. Now I do my own research about my disease and, for the most part, only take advice from medical professionals.
To be absolutely clear, I am not blaming the people who participate in Sickstagram, “sickfluencers,” or online communities for any of this behavior, and I hold no ill-will (no pun intended) towards them. I think these problems (and many, many more that I frankly just don’t have the space or time to write about here) are just inherent to existing on social media. It is literally engineered by thousands of incredibly smart people to be addictive, to rewire your brain to the point where it’s all that you think about, to force you to compare yourself to everyone around you. Ableism sequesters disabled people into online spaces, because sometimes it’s the only place we can talk freely about our lived experiences without making abled people feel uncomfortable. That is not your fault. Believe me, I spent years in these online holes, so I’m certainly not one to pass judgment on others. I just want to do anything, even if it’s just writing this small blog post that maybe no one will ever read, to help other people avoid getting into these mindsets altogether, or to help them realize that the way they’re living is not the way it has to be.
I understand that we live in a country where most people are failed by our medical system. People are not given proper information about their disease or prognosis. We really are on our own to figure things out, and we seek each other to get us through the journey. Unless you can decipher scientific journals, your options for getting legitimate medical information are limited. I wish, with every fiber of my being, that online illness groups were different. I wish they showed us how to live our best lives and that we could rely on them to help us, but in my experience, we cannot. That’s just not how social media works.
