I finally got it on paper: Ehlers Danlos Syndrome, hypermobile type. I keep thinking I need to sit down and write how I feel about it and what’s to come, but every time I try, I can’t think what to say. My rheumatologist diagnosed me, and also labeled my obvious autonomic dysfunction. On top of that, he looked at the MRI images of my lumbar spine and called out degenerative disc disease. So, in like ten minutes I had answers to questions I’ve been asking for years. Maybe it’s because I had already answered the questions for myself that it seems so anticlimactic?
On the one hand, I’m thrilled to finally have a piece of paper I can wave in everyone’s face. Everyone who doubted me, who gaslit me, who told me I was faking or exaggerating. I can show it to every doctor who proposes psychotherapy or anti-inflammatories.
I’m thrilled that I’m finally exploring pain management options that have even the slightest chance of working (I’m on gabapentin right now, seeing how that goes). I have treatment ideas that are actually relevant and not grossly dismissive, inappropriate or inane. Those are all really good things.
I feel like I’m “officially” disabled, despite having been clearly disabled for quite some time.
I’m angry that validation from some doctor somehow gave me permission to really call myself that, to really devote myself to caring for issues I’ve known were there for years. To stop holding my breath and telling myself I might wake up tomorrow perfectly fine. To accept that this is truly a new normal and that nothing is going to be as it was when I was 20, 25, even 30.
Mostly, though, I’m just…relieved? This exhausting process of chasing and fighting for some diagnosis, any diagnosis is finally over? I’m having trouble getting that through my head. That it’s over and now I can focus on treating, accommodating.
I’ve used my chair all week at work and felt so much less anxious or guilty about it today. (Tired of fielding questions and comments about it, but whatever.) I’ve been able to tell myself firmly that the chair makes my day easier. I’m less fatigued, less stressed out. (As it happens, being in tachycardia all day is tiring! Subluxing knees, ankles, hips? Painful. Tiring.) I feel weird that diagnosis allowed me to accept that.
Still, it’s a new beginning. I’m working on it.