Alphabet Soup Diagnoses
“There’s nothing wrong with your images.”
“If you had to pick just one thing to fix, what would it be?”
“All of your tests came back normal.”
“You’ll have to go see another specialist for that problem.”
No matter what I did it seemed as if there was no middle ground when I went to a doctor’s office. I was either too broken and they couldn’t handle the amount of ailments that I had, or I wasn’t broken enough and everything was apparently normal. Which was I? Completely broken or completely normal? Because surely I couldn’t be both…but for years apparently I was. I was accruing diagnoses like some people collect souvenirs. Carpal tunnel. Cubital tunnel. Postpartum depression. Anxiety. Whiplash Syndrome. Kyphosis. TMJ. Migraines. Fibromyalgia. Peripheral Neuropathy. Tinnitus. The list went on and on. How could I possibly have this many things wrong with me and yet how could no one help me? I was only in my early thirties.
I was beyond frustrated one day after a particularly unhelpful neurologist appointment and I called my dad to complain (ok, yell-sorry Dad). I was sick.and.tired of being told that there was nothing wrong with me because somehow I kept passing all the routine screening tests. Surely feeling the way I was feeling wasn’t normal (spoiler alert: it wasn’t). I knew that something was wrong with my body. How I was living was not the quality of life I imagined. Living with migraines had become normal and thunderclap headaches that would put most people in the hospital thinking they were having an aneurysm was a daily event for me, and yet the “tests were fine.” I couldn’t even turn my neck to look over my shoulder to merge on the highway yet the “images were normal.” I hadn’t had a REM cycle in years and was practically a living zombie but I was told to just take melatonin. I wasn’t broken enough for the specialists, but my poor primary care doctor had no clue what to do with me. Thankfully my dad got the absolutely brilliant idea of having me type up all of my symptoms and other relevant information and sending it off to him so he could take a look at it. Important fun fact, my father is a retired physician and at the time of my emotional outburst was the Chief Medical Officer of a hospital system in New York state. Being the dutiful daughter I am, I typed it up and the next day he called me back with a long-distance diagnosis after conferring with some colleagues. The consensus was a traumatic brain injury and their suggestion was that I look into finding a long-term post-concussion care doctor in my area. I found a highly rated one within our metro area and soon my father’s diagnosis was confirmed by said specialist; I did indeed have a mTBI, specifically Persistent Post-Concussion Syndrome.
After years of bouncing around to specialist after specialist I finally had a diagnosis in hand that proved I wasn’t making all my symptoms up. I did indeed have symptoms that needed attention from neurologists, physical therapists, orthopedists, and various other medical personnel, but it never occurred to those specialists (many of whom I’d already seen!) that my varied symptoms were a sign of a greater underlying problem. They could never see the whole forest because they were so focused on their singular tree. The problem was, my entire forest was sick and treating just a single tree was not going to fix anything.
Once I started treatment with my concussion doctor and started to progress with my mTBI healing I slowly began to peel back the layers of my broken body. As I did so, I began to suspect that there was more than just post-concussion syndrome going on, because after a year of continued therapy, trigger point injections, different specialists visits, etc. everything just plateaued. My body simply wasn’t normal; the question was, what was it? Then one of my amazing doctors asked me if I had ever heard of Hypermobile Ehlers-Danlos Syndrome (hEDS) before. That one was new to me and he encouraged me to take a deeper look at it before meeting with him again. Hitting up Google later that evening was a revelation to me. It was like reading an autobiography of my life written by a bunch of other people, and the more I delved into it the more I realized just how much hypermobility is a multi-systemic illness. Once again I was reminded of the fact that I needed to find medical professionals who were willing to look at my entire body holistically and see the whole forest.
After a consultation with an hEDS specialist I was diagnosed as a zebra (what we hEDS-ers call ourselves) and he asked me to do some additional tests because he suspected I had some additional co-morbidities based on many of the symptoms I described. Symptoms that seemed to have no connecting factors because they ranged from fatigue to pain hypersensitivity to GI issues to dermatological issues to symptoms in various other bodily systems. How easy it would have been for him to dismiss all of my weird, additional issues, but over the years as a clinician he learned that hypermobile patients all seem to share many of the same traits including various multi-systemic symptoms. In light of that I was given additional tests and it was discovered that not only am I hypermobile which has its own set of problems, but I also have Postural Orthostatic Tachycardia Syndrome (POTS) as well as Mast Cell Activation Syndrome (MCAS), both of which oftentimes go hand-in-hand with hypermobility and have different treatment modalities then just hypermobility itself. I was a walking, talking billboard for multi-systemic chronic invisible illnesses. Unfortunately my story is all too familiar to folks who live with invisible illnesses, especially for those whose involve multiple body systems.
Having bounced around for several years being either too broken or not broken enough left me slightly disenchanted with the medical community as a whole. I also began ignoring my own health because when you’ve been told enough times that there’s nothing wrong with you, you either a) believe them, or b) give up trying to convince people. However, looking back on those difficult early years of my battle I learned the invaluable lesson that you have to keep fighting for yourself. Learning to trust yourself is difficult, especially when you have been dismissed from the medical community time and time again, sometimes for years, but it is essential to continue to fight and advocate for yourself because ultimately it is your body and your health, no one else’s. Eventually you will be able to find someone who will believe you and will take your hand to help you along your journey to healing. The road may be long, and the battle may be hard, but continue the good fight and wave the banner high. You are neither too broken or not broken enough, you may just be a special zebra.
