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Everyone has everything
1Publicity around chronic disease is important. When I was younger, there wasn’t any coverage of people living with chronic diseases. These disorders were meant to be a secret, a shame. Because of that, so many of us suffered silently and doubted our own realities. Today, everywhere you consume media, someone is showing or explaining an ailment. Exposure to a world full of everyone’s complaints and possible conditions are never ending. Unfortunately, social media and many lifestyle websites push confusing and blatantly false narratives around chronic illnesses, especially invisible ones. What ends up happening is, people share their vague symptoms and that leads to attention-seeking and faux diagnoses instead of offering community support, science-driven information, and helpful choices.
In the world of chronic illness sufferers, our symptoms fall into two camps: I’m weird/this is weird or everyone is doing this/this is normal. Being hypermobile, I use to feel cool-weird. Party trick making friends weird. No one else was as flexible as me. It was a literal flex, a novelty to move in different ways than the average person. Having Postural Orthostatic Tachycardia Syndrome (POTS), I thought everyone else felt dizzy and nausea when they stood for too long. I figured that everyone hated doing cardio because they would pass out or loose their sight from their high heart rate. I thought we were all in the same dysautonomia boat. I knew that my gastroparesis was strange but I just categorized it as having a sensitive tummy. Those were the only conditions that I had before my major physical breakdown a decade ago. They were the ones I grew up with and thought of as just a part of life. They weren’t my defining traits.
If social media and uploaded videos where everyone promotes their personal problems were around when I was a young kid or early teen, I likely would have found myself absorbed into the communities that wallow in their illnesses. The helpful, accurate, motivational content would have fallen by the wayside as I found comfort and fellowship with other people complaining and telling me that all my attributes and quirks were a product of my physical conditions. I would have let my diseases swallow me. I would have felt that they made me special in a negative way and that would have defined my existence.
Recently, I was having a casual conversation with a woman about 10 years my junior. Out of the blue, something about having dermatographia came up. I asked her if she had xyz symptoms. As she volunteered more information, it became obvious that she also had POTS and EDS. She told me that she has been suffering with her symptoms since she was around 7 years old. Her family doctor had just given her a non-clinical diagnosis of POTS. She told me that one of the main reasons she hadn’t been aggressively pursuing a diagnosis and treatment plan was because of the onslaught of young women claiming illnesses on social media. She was afraid her doctors would lump her in as an exaggerating attention-seeker. She also didn’t know if she should even believe that she had medical conditions. Doubting herself because she saw such extreme examples online and because she worried about being a hypochondriac.
I’ve been aware of the social media trends and always held attention for modern media stories of chronic illness. I enjoy reading well-thought out articles of a person who went through the hellscape of trying to get a formal diagnosis and now lives with their conditions. I appreciate the tips and tricks videos for managing disorders. I love giving advice to people who want it and I consume advice from others. The chronic illness community can be a wonderfully helpful and soothing place.
However, these days my fy pages these days are overwhelmed with “if you do _______ then you probably have _____!” Just the other day, one of my favorite eye-roll inducing videos came up. In it a woman in her late teens/early 20s is taking seats in various locations. She puts her legs up on the seat. Each time making the claim that if you sit with your legs up or crossed on the seat, that you have POTS. Now, I do this. I will sit in peculiar ways and I have to readjust often. But guess what y’all, it’s because I’m tall. Seats are awkward heights. I also have EDS so being in any position for too long will hurt. It has nothing to do with my POTS. If she were to lay down every time she sits, that would be more applicable as you are trying to regulate blood pressure. Not everything you do is an example of your disease.
The number of claimed “symptoms” of ADHD, autism, POTS, EDS, etc are innumerable. If you fold laundry in a certain way you have _______. Do you eat apples with the skin on? Then you have __________! Do you dislike talking on the phone? Watch out because you have ______. Here’s the thing, if those actions and feelings are true indicators, then just being a human means you have a diagnosable disorder. Every friend, family member, partner, colleague, passer-by on the street has those “symptoms”. Maybe it’s true that everyone is broken and able to be categorized as ill. If so, doesn’t that mean that no one is sick and being a human is just a condition-based existence? I’m not closed off to that idea. People are complicated and medical science is barely keeping up with being 50 years behind the times. But… BBBUUUUTTT… acknowledging symptoms and throwing truly life-changing armchair diagnoses at people doesn’t help anyone.
What are the solves? The fixes and solutions? How are all these people who identify with the showcased symptoms suppose to make their lives better? How do they talk to their doctors? What can they do to make living with symptoms easier? Just reinforcing my pain, my bad days, and my issues doesn’t give me the tools I need to keep going. We need help. Tips and techniques for navigating medical systems and an unforgiving world. We need motivation. Love. Empathy with a side of hope. Having a medical condition is not a novelty. It is real life and it has real consequences.
Miseries of London. Thomas Rowlandson (British, London 1757–1827 London)