Today’s post is part of a new weekly series on my experiences with disability, meant to provide information for writers who want to authentically include disability in their books and for other young people to feel more comfortable owning their own disabilities.
The usual disclaimers: Disability is a particularly unique experience and will vary massively by the person and the condition. This is in no way meant to speak for anyone except me.
Last week I told you guys a little bit about my condition and my general understanding of how it has affected my life so far. Today I want to take a little trip down memory lane to the year my symptoms showed up and I took the long journey to diagnosis. This got much longer than anticipated, so this weeks post is going to cover functioning and medical systems, and next weeks will cover mental and emotional process.
My first symptoms began in highschool as tremors in my hands and myoclonus, which is a fancy name for twitchy muscles, in my upper arms and thighs. I didn’t bother much about it and despite seeing a neurologist who wanted to do ongoing evaluation, I rarely thought about it or even took my medication (shhh). The day before my 22nd birthday I had my first active set of movements, and from there on it spiraled downward. I was initially diagnosed with Lyme’s disease and put on medication, but when nothing got better I continued to see doctors. Because I was involved with a horrendous medical system, I was unable to see a neurologist for FIVE months. In the meantime, a handful of family practice physicians within a single clinic attempted to help me, with varying degrees of success or kindness. At the time I was new to town and did not have a regular doctor, though I soon settled on one of the only ones who was kind, attentive, and didn’t tell me I was crazy. Most of them told me I had an anxiety disorder, was crazy, just needed to relax, and variations of this. I did go and have a psych assessment done, mostly because I wanted to shove my results in the doctors faces, but also because i wanted to be sure (see next weeks post for more details). Overall, the sense of questioning myself and not being trusted or believed by doctors was one of the most horrible parts of the whole situation.
This is just me being honest here- we often tell people not to be afraid of needing psych help, but I had no idea how deep the stigma and sense of shame or brokenness is in actual experience until I had to go see someone myself. It is an incredible act of courage to seek out help, y’all. Way huge. If you know someone who has found the courage to go to a therapist, you need to be proud of them. Because it is hard.
But I digress. Once we ruled out psychological conditions, the doctors put me on any med they could think of that could help. By November of that year, I was on five medications, each two to three times a day. My life revolved around taking my pills. Incidentally, I was also working full time and going to grad school part time during this. As you can imagine, my memory is missing massive parts of that time! By that time my symptoms were so intense that I would have to slip off into our conference room at work and lay on the floor as my body jumped, twisted, and froze for as long as twenty minutes at a time. I couldn’t drive, run errands, or sometimes walk depending on what was happening with my body. My friend had keys to my apartment and car for emergencies, and I had a regular system of phone calls with friends and family to make sure I hadn’t fallen, hit my head, or otherwise hurt myself, as I lived alone at the time.
The neurologist I saw was incredibly impersonal and disinterested. She, too, intimated, following our obviously extremely revealing five minute encounter, that I must be an anxious person and that it was mental health causing my body to have this reaction- and I was essentially sent off with a good luck and see you in six months.A few other kinds of tests were done, checking for seizures and deficiencies, as well as one horribly failed attempt to see a specialist (let’s just say we didn’t even get a doctor in the right dept), but the one significant thing was that my regular doctor, so by this point saw me more than my mother, decided that since she wasn’t getting anyone else to help us, she would try a few things on her own. She prescribed a somewhat unusual medication, typically given to patients with Parkinson’s. And within a month the frequency of my symptoms had decreased to the point where I was once again safe to drive and no longer had to visit the conference room nine times a day.
Long story short, this medication, in a larger amount,proved the key. I weaned off of the other pills, including the ones that made me fall asleep at my computer mid-email and the ones that made me sleepwalk, and I’ve been on this dose of medication ever since.
Next week I’ll dive into some of the thoughts and feelings I dealt with during this process, but hopefully for you writers, this gives you an idea of some of the systemic issues your characters may confront. For the rest of you, has anyone else had either a really terrible or a really fabulous experience with a medical system or particular provider? What has your journey been like?