Dealing with the Pain of Being Ignored by Doctors for Years

I got a diagnosis for my EDS a few months ago. It felt awesome getting a diagnosis finally. But it hurt so much. My whole life I had been told it was my weight (I am normal weight), and that feeling pain in my joints (not muscles) was a completely normal thing by doctors for years. And my mother always just told me the same thing, and told me to suck it up when I was crying in public because my legs hurt so bad. Any way to cope with this? It just hurts that I've been ignored for years until it could not be avoided and I overworked myself to the point of my legs giving out.

Your answer

anxious.queer.zebra

2y ago

I'm scared I'm getting close to things completely giving out on me. Literally crying at work rn in pain

sstorm

2y ago

The thing with these docs, who know nothing about EDS, is the disregarding of what I know about my own body, and since this condition isn't well known I've had to become an "expert". I'm exhausted advocating with myself. I've only been fighting this for 10 years (diagnosised 5 years ago). The eff'd cycle of pain & fatigue is not all in my head. And neither is the dislocation (or partial) of joints. I think I could deal with the occasional dislocation if my muscle could get a break from all the work they do.

LaurenRomero

2y ago

All my doctors I see say everything is my weight but now since I’m having trouble eating pretty much everything from my hernia blocking everything I’ve lost weight but not the healthy. I also am going to tell off the next doctor I see that says it my weight.

rj.crow

2y ago

Same here. I recently dropped a Dr that was obsessed with BMI. Sure, my number is high, but that’s because I’m muscular. I’d be in fantastic shape if my bones would stay where they’re supposed to.

rj.crow

2y ago

I’m trying to get diagnosed now and I absolutely relate. I have some other psychological issues that lead me to respond to anything I feel with unbridled rage, so when I cope with that it helps handle the feeling that caused it. That might be pretty specific to me though.

Lackadaisical

2y ago

I feel that in my soul. Honestly, I don't know of a short cut to get passed the trauma of medical gaslighting, but steering clear of doctors (and all other people) who tell you that your pain is all in your head helps. I've also found a lot of understanding in online EDS forums.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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