Like every good superhero, I have a long, grueling tale that leads up to where I am today. This is the real version, as I experienced it.
To be honest, I’m not even sure where to start.
I could go in chronological order with moments when my body started giving me hints. There would be a long list of symptoms, starting as a baby, all the way to this year. This list exists, both on a timeline created by my incredible primary who spent more than two hours drafting it the first day we met, and in my own interpretation in Origin Story Part 1.
The problem with going chronologically, however, is that it’s not actually my experience.
Some symptoms, like my various GI complications, crept up on me so slowly that by the time it was unbearable, I had no idea when or how it started. I remember watching a documentary in middle school about lack of clean water in Africa, and how many children grew up their whole lives without experiencing a healthy, solid stool. I remember a light bulb moment when I thought, “huh, I wonder when the last time I had one was?”
With other symptoms, I noticed right away, like the pain and numbness in my limbs that kept me up many nights. My own response to these observations, however, was quite varied. Some symptoms that, in recent years, were the keys to unlocking a diagnosis, seemed normal to me. After all, both of my sisters, and in fact all of the women in my family, had joints that hyperextend, so why would it be weird if mine did? -- the added challenge of a genetic disease. My periods were wildly irregular, but no one talked much about these things, so how should I know if that was weird? I just assumed, partially by my relatives’ experiences, that there was a normal amount of pain, discomfort, hormonal imbalance, and general weirdness to being a human, and that bodies were simply imperfect. So, many symptoms went unreported for decades.
When I did start to think something wasn’t quite normal, I would speak up. Yet, the reactions of my parents and physicians were even more varied than my own. In some cases I was immediately rushed to a doctor or into treatment. The ocular, and later genital, ulcers were clearly not normal, and posed enough immediate threat to call for thorough attention. Other cases, such as migraines and GI complications, still warranted parental concern and problem-solving, but were common enough that no one considered them indicators for a larger issue. Still other cases were seen as so trivial, or simply misunderstood, that they were brushed off by family and physicians alike.
I was labeled an over-anxious hypochondriac with a low pain tolerance, and that was that.
My dad still hasn’t forgiven himself for teasing me about my “popping". My entire childhood, I expressed discomfort, pain, fatigue, and painful popping in my joints. There never seemed to be anything actually wrong about my joints, though, so instead of being concerned, my family teased me for being a wimp. My dad in particularly would teasingly ask “did it pop?” whenever I got hurt (what this did to my self-esteem is a topic for another day).
It wasn’t until last year, when mapping out my timeline with a brand new primary care provider, that it became clear how important that particular symptom was. It was amazing to me, how she seemed to be psychic. I gave my typical shpiel about the 12 years of straight diarrhea, the migraines, and the ulcers. Having seen millions of specialists, I thought I knew what was important to share. My provider, however, knew that this couldn’t be the full picture. Early on in the 2+ hour session, she asked me if I get fungal infections. I was SHOCKED. How could she have guessed that? Then she asked if I’d ever had Lyme disease. Again, it had been treated, so I’d never thought to bring it up before, but how could she have known? And then she sighed, put down her notes, and said, “let me guess, when you were younger, did your joints pop a lot?” I couldn’t believe that one of my oldest complaints, the one most silenced, that I’d felt ashamed of for half of my life, would actually come up like this.
But she knew. Not only did she know my diagnosis, something that had eluded specialists for fifteen years, but she actually had the same diseases and knew exactly how it felt to be silenced for so long.
THIS is how I remember my origin story. It’s not a coherent chronological list. It’s snapshots of big moments that illuminate smaller, forgotten incidents.
I remember being a generally happy kid, albeit painfully introverted and a little socially awkward. I had less energy than my peers, but didn’t think about it much. I then remember the anxiety of being a teenager who couldn’t quite pass as normal and the shame of hoping no one would find out what was really going on in my life.
I remember being told over and over that I was just anxious, that my pain and discomfort were in my head. I remember truly believing that I was absolutely crazy, and it becoming a self-fulfilling prophecy as the cycle of panic attacks began.
I remember therapy and a montage of doctors, specialists, and hospital visits. Then there was the moment when my mom read about EDS in her medical journal and exclaimed, “wow, this describes all of your symptoms!” ...but then somehow we decided I didn’t have it. I remember the moment I was misdiagnosed with genital herpes, by multiple doctors, and crying alone in the stirrups, because my doctor was too busy to spend time processing the news with me. Then finding out it was all wrong, and being directed to rheumatology for potential autoimmune diseases. I remember how badly I wanted it to be Behcet’s disease, my next diagnosis, because it would mean answers and certainty, but then the inquisitive part of me finding too many inconsistencies to truly believe it.
I remember the final sense of relief at a diagnosis that actually made sense, the fear that it was just another misfire, and the uncertainty of what this diagnosis meant for my life. I remember the debilitating trips to Baltimore, Providence, and Boston to see doctors who had actually heard of EDS.
And then, I remember the dawning of realizations, the flashbacks. I would read about EDS and stumble upon yet another symptom, something I’d always struggled with but had thought I was either crazy or that everyone had it and I was somehow just weak. Or a new doctor would ask a question and I’d suddenly realize that, yes, I do become incapacitated every time it’s hot out. I do sometimes have trouble swallowing, accompanied by neck pain. I do have to sit down and prop up my arm in order to brush my teeth. I get sudden violent chills and hot flashes… out of order snapshots, linked by relevance rather than time.
It’s like a puzzle. When you first dump out the pieces and start sifting, you just look for edges or obvious differences, but for the most part it all looks the same. As the puzzle starts coming together, though, you realize that you’ve seen this piece before, but didn’t know what to do with it, so it went back in the pile to be forgotten. Once more and more pieces are in place, these forgotten clues suddenly become vivid and crucial.
That’s how I remember my symptoms -- not as how they first appeared in my life, but as the fifth or sixth time I faced their truth and was able to finally make sense of them in the bigger picture. So when I see a new doctor, and they ask me to tell them about my situation, from the beginning, I’m honestly not even sure where to start.