Buckle up, folks, because this is a stream of consciousness blog post. Who knows where it will take us?
There’s this screenshot of a Tumblr post floating around the chronic illness community where a doctor asks a patient, “So otherwise you’re healthy?” and the patient laughs like it’s the funniest thing they’ve heard all year. Never have I related to anything more.
It feels like… I don’t know, like there are too many things happening at once. I’m juggling a multitude of flares that require a lot of guesswork to treat. In a lot of ways, I feel like it’s 2008 again and my doctors don’t know what to do with me and my long list of symptoms. Bouncing around from specialist to specialist, filling out new patient paperwork, hoping someone can save me from my body’s shenanigans…
There’s so much from that time in my life I’d forgotten, or, more likely, repressed. Feelings I never fully dealt with. A couple of months ago, when a doctor asked if I had pulled my own hair out, if that could be contributing to my hair loss, the memories of all of the times a doctor didn’t believe I was physically sick came rushing back.
I was eleven years old, sitting outside an exam room, while an optometrist in the mall asked my parents if there were any problems at home. I was thirteen years old, standing in a hallway, while an angry pediatric rheumatologist told my mom I was too young to have arthritis. I was thirteen years old, attending a meeting with staff at my middle school, when I was told I needed to take a glorified IQ test and meet with their psychologist before they’d consider accepting me into their homebound program. I was fourteen years old when a school nurse contacted a doctor I only saw once to “prove” I was faking it all of those times I had to call family to pick me up early.
I saw dozens of specialists before I finally received answers (hEDS, dysautonomia, gastroparesis). Some were pleasant experiences, saying they believed something was wrong but I’d exhausted all of their resources. Others were not so pleasant. Honestly, my mom remembers more than I do. Everything from around that time is such a blur… From my mom arguing with ER staff, to being misdiagnosed and treated for lymphedema, to a child psychologist interviewing me about my sexual history while I was waiting on HIV test results (I was thirteen and a virgin).
Y’all, my childhood was far from normal. I’m sure I should already be seeing a therapist to properly unpack and deal with all of it.
Anyway, back to my point, if there ever was one.
Too many things happening at once. I am currently juggling six specialists, not to mention all of the tests they’re sending me for (which all have to be done ASAP, of course), and attempting to keep up what I call my psoriasis containment regimen. Now I have all of these repressed feelings to sort through, from a time in my life I’d rather leave in the past, and…
Where do I find the time and the head space to be…myself? Not a patient, not a tangled bundle of childhood trauma, not stressed out the wazoo. Just plain Danielle: writer, reader, jewelry maker.
I think half the battle of living with chronic illness is finding balance. The ever-elusive balance.
Lately, balance for me means catching up with a friend over Snapchat or Instagram, while I wait for a doctor to enter whichever exam room I’m occupying that day. I mean, frantically swiping a finger across my phone and shoving it in my back pocket while my face burns with embarrassment isn’t the most graceful first impression to give my doctor, but it’s either that or leave my messages unread for another week, so, we do what we have to.