After years of questioning, gaslighting (from others and myself), and feeling like I was just being “too sensitive,” I finally have a name for what’s been happening to my body: Hypermobility Spectrum Disorder (HSD).
My rheumatologist believes it may actually be hypermobile Ehlers-Danlos Syndrome (hEDS), but due to the diagnostic overlap and current criteria, I’m officially diagnosed with HSD for now. I scored 7/9 on the Beighton Scale, and for once, a medical professional looked at my history and actually listened.
It’s incredibly validating—but also a lot to process. I had physical therapy today, and after I shared my diagnosis, my PT adjusted our entire approach. He introduced me to a low-impact strength training program made specifically for people with hEDS/HSD called Bending Without Breaking, I believe? (Which is such a good name, honestly.)
Turns out, my core is way weaker than I realized. I’ll definitely be feeling today’s session later… but it feels like the right kind of hard. The kind that means I’m actually working with my body now instead of fighting it.
Since I can’t take NSAIDs because of my bariatric surgery, the only medical treatment I’m on now is gabapentin; at six times the dose my psych originally prescribed for anxiety. It’s wild how pain management is often trial and error, especially with conditions like HSD.
I also have blood tests coming up, some routine, some autoimmune panels I’ve never had done before. I can feel my B12 is probably low, and my protein intake hasn’t been ideal lately. I’m anxious about what those labs will show… or won’t show. But either way, I’m doing what I can.
This diagnosis doesn’t change who I am or magically make things easier, but it does lift this unbearable weight I’ve been carrying, like I finally have permission to stop doubting myself. I shouldn’t need a diagnosis to feel valid, but after so long, it means everything.
Here’s to healing, to answers, and to not bending until I break.
