A huge stigma about self-diagnosing exists among the medical community — how it’s a bad thing; if you tell your doctor “I saw X online” they automatically brush you off and label you as a hypochondriac, drug seeker, etc. All of this is what I was afraid of when I went in to tell my doctor (who I’d learned about online).
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
I’d been struggling trying to figure out what was making me feel so awful for a long time; I just wanted answers. My doctors couldn’t find them; they kept saying everything was OK. I did all of those “symptom checker” things online where you put in all your symptoms and it tells you what may be wrong — I got desperate because I had no idea what was going on in my body. But they were all 110-percent unhelpful.
Then, an Instagram account I had for my dogs actually became beneficial instead of just a way to kill time. I’d get on while I was bored or couldn’t sleep. I was following a few girls with service dogs who posted about their chronic illnesses. One night, I clicked on #spoonie on Instagram, looked at all the posts and saw a lot of people post about Ehlers-Danlos syndrome (EDS), among tons of other things.
Being the nerdy medical person I am (hello, I’m a nursing student!), I looked up all the medical terms and diagnoses I didn’t understand. Initially, it was purely for the sake of “oh, what is that?” but at some point it became about “maybe one of these people has whatever I have.” When I looked into EDS the first time, I briefly read
about it, figured out what it was and didn’t take it any further because it’d been an “what is that?” search. I didn’t think I have it since none of the main symptoms of what I found online really fit what I felt. But one day I came across it again on Instagram; a girl had posted a picture with all the symptoms included in her EDS diagnosis, most of which I felt; some things I didn’t even realize were “symptoms” were on the list, and it really resonated with me. I researched EDS as much as I could, considering there’s really not much about it out there, and realized “this
is me.”
I’d been to doctor after doctor for years. Some ordered tests, others didn’t; some cared, others didn’t; some believed me, others didn’t. I started to feel crazy. Do you know what that feels like? To think to yourself “Am I really this sick? Is it really in my head? Am I really just being dramatic about it? Am I unconsciously looking for attention? Is this how everybody feels and I just can’t handle life? Am I really this weak?” It’s an awful feeling to question your own sanity because you’ve been told so many times there’s “nothing wrong” with you. I hated it. People will tell you not to let it get to me, but when a doctor, the one person who is supposed to want to figure out
what’s wrong with you, tells you you’re fine, you start to wonder if you really are perfectly OK. Finally after two years of playing around with a handful of doctors and a specialist, my PCP finally decided I should see a rheumatologist.
It was around this point that I’d learned about EDS and “spoonies” and Postural Orthostatic Tachycardia Syndrome (POTS), but because of the stigma of self-diagnoses, I knew I had to be careful when I saw the specialist: during out extensive conversation I mentioned a bunch of symptoms I had, and she handed me a pamphlet on benign hypermobility syndrome (which, is actually not the same as EDS).
The day I self-diagnosed changed my life. Had I not figured out what was wrong, had I not advocated for myself, I may not even have a diagnosis now. I could still be questioning my sanity and feeling like a failure for not being able to do “normal” things. Now I realize there’s a reason for every single thing I feel, and it’s my new normal for me to not do some things others can do. I finally got the push from one doctor to see several others who were able to help me get some of my life back.
Self-diagnosing isn’t something to take lightly. When used correctly, it can be a tool to help you and your doctors understand what’s wrong. And if your doctors disagree with what you’ve found online, you may have to trust them to try to figure out what else it may be.
There is always a chance I could have been wrong in what I researched, in what
I believed I had, and if she’d told me no, she thought I had something else, I would have considered that as well.
Doctors are trained to think horses, not zebras, when they hear “hoof beats” in medicine, and that’s reasonable; you can’t assume everybody always has the “worse case scenario.” They also have a process of elimination for diagnosing, which I think is reasonable, and I think people should respect that. But I am the person who needed the unreasonable; I am the zebra they’re trained not to look for right away. There’s a whole herd of us out there, and we really have to advocate for ourselves (which often includes self-diagnosing) because at the end of the day, we are the ones the doctors aren’t expecting to see, and we can’t let our care suffer because of that.
Editor’s note: Please find a medical professional you trust when seeking a diagnosis and advocating for yourself. Do not take medication before getting an official diagnosis.
Alexandra is a wife and nurse dealing with Ehlers-Danlos syndrome (a connective tissue disorder that affects every body system and causes chronic pain) and its comorbidities (postural orthostatic tachycardia syndrome, migraines, irritable bowel syndrome, mast cell/allergy issues, sensory processing issues, adrenaline dumping/panic disorder, and general dysautonomia). She loves her husband and three golden retrievers more than anything and still tries to do the hobbies she can, when she can (photography, horseback riding, painting, singing and playing violin and piano).
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