Body of Evidence
If you’ve been following along, by now you know I have Limb Girdle Muscular Dystrophy 2B (LGMD2B). But, like many others who suffer from chronic disease and inflammation, that’s not my only issue. I’m not the type of patient who has a tidy little diagnosis that falls into one neat box. I’m a detective—sorting images of my symptoms scattered around me, attempting to pin them to the wall. Red strings connect my timelines as I narrow down the triggers. My health is like a murder I’m trying to solve, and the doctors are telling me there isn’t a body.
I’ve felt imposter syndrome in discussing anything without a diagnosis, but lately, I feel like the experience of seeking one holds so much value in itself: chasing it all down, haggling with health insurance, advocating for myself, being gaslit, gaslighting myself, and the worst of all—hold music. 💀
But my blood tests are coming back and they’re covered in red flags. Positive ANA. Centromere levels are way too elevated. Small bruises are covering my legs. Rashes are popping up and disappearing, leaving scars behind. One eye continues to become severely inflamed and then miraculously heals. And now…a bald patch. Alopecia areata. The writing is on the wall. Something is wrong.
I collect pictures in an album on my iPhone for proof to show the doctors.
Proof.
Like I’m on trial. Like I’m asking for this to happen. Like Munchausen’s is more common than an autoimmune disease. Like I wouldn’t rather spend my money online shopping than on this $250 medical bill. Like I’m the criminal here.
I struggle with the dichotomy of desperately needing my medical providers and having little trust in them. A lot of this stems from the years of medical trauma I’ve endured with my LGMD2B. I’ve spent so much time during appointments educating my doctors on what LGMD2B even is. Aside from my neurologist, I have yet to come across a single doctor who has heard of my condition before I bring it to them. I’ve literally been told, “I just quickly googled your condition” by an orthopedic specialist for my atrophying knees. So yes, I have a lot of trouble entrusting them with my health when they have so little knowledge surrounding the greatest thing that impacts it. But alas, they run my blood tests and track my hormones. They evaluate my atrophy and screen me for other diseases. They prescribe the medication I need, and I couldn’t survive without them.
1, 2, 3, 4, 5. I’ve had five appointments this week: therapy, consultations, hormonal specialists, physical therapy, and dermatology. I had to get a shot in my head today. Yes, you read that correctly. A shot directly into an alopecia patch that’s been triggered by some mystery autoimmune disease. This leads me to May 28. I countdown to it like it’s Christmas. It’s a day I’ve been waiting for, and it’s a wait that every chronic illness sufferer can relate to. It’s the day I finally get to see a specialist.
I have my photo albums, my timelines, my test results, my pharmacy, and my Oura ring report ready to go. I’m just waiting for the jury to render the verdict—I mean—diagnosis. As chronics, we want to be diagnosed. Not because we want another issue, but because we already have the issue and want to solve it.
Here’s to hoping more doctors treat us like the detectives we are rather than the criminals some of them make us feel like. I think it makes a world of difference.
Be well,
Amanda
