September is Pain Awareness Month. I've dealt with chronic pain my whole life. But it was not addressed, recognized, or respected until I was 19 and I got my #EhlersDanlosSyndrome diagnosis. And even with an explanation, my symptoms have been progressing but my mgmt has not. 1/14

I was told for years that I just had anxiety. That I wasn't in pain, that I was just growing. I went for ortho at 17 for my shoulder. No one would operate, but I was dislocating all the time. Then in college I began dislocating my hips. 2/14

The solution? I was supposed to strap into a triangular wedge every night to keep my feel apart and hips aligned. It was the most ineffective, dangerous, and dumb solution. Other failed solutions include: swimming, exercising, building muscle. 3/14

I have #POTS and faint standing up. I am allergic to my own sweat. Do doctors care? No I should exercise anyway. Will I ever build the muscle mass to overcome failed collagen? No. But they'll keep recommending PT 4/14

Even though insurance won't cover it because I'm palliative, I'll never get better. And if you can't prove you'll get better, you don't deserve care in our system. Drs scoff that I won't follow their orders, but they won't make them affordable or accessible to me. 5/14

My first pain mgmt doctor told me point-blank "there's nothing I can do but look into mental health resources, a lot of your people kill themselves." I was 19. Now at 27 I know the cost of unmanaged pain in my community, it's true, we do lose lives. 6/14

My pain management team after brain surgery fucked up my meds and crossed opioids with low dose naltrexone (a big no no). And then told me that IV Tylenol was too expensive (even though it was the only thing that worked). I'm tired of austerity. 7/14

Now at 27 I am having a ton of flares and new allergies. I lost 20 lbs in two months and it's still not a priority, because I still "look good" (c'mon Drs you should be beyond thinspo). Which means I've lost muscle mass. Which means I dislocate more. 8/14

But my old pain mgmt doctor doesn't take my insurance. An hour long appt costs $1000 and every follow up $250. So I can't go. Bc I need to budget all my savings for my GI issues. Because an endoscopy also costs $1000 out of pocket. And I can't even imagine 9/14

The costs I'll incur if I need a feeding tube or other invasive measures. So this pain awareness month I'll be in a lot of pain, because I'm always in pain. Because I'm allergic to most additives (like food dye and corn and alcohol and dairy) so OTC meds are out. 10/14

And compounded meds are ridiculously expensive too. My pain management is a heating pad and bag of iced peas. That's it. I dislocate whole parts of my body, and all I can access safely is a heating pad. And I'm not alone. There are thousands of "rare" patients like me. 11/14

So when you see me, know that I'm in pain. Know that I'm always in pain. Know that I've had to learn to cope and focus because I've been gaslit my whole life. Know that I don't talk about it because I know you don't care, because no one outside my community has cared. 12/14

Know that not one medical professional has cared. Not one has had an answer. All of them have put a price on my quality of life that I can't afford. And they still cast me and others like me as opioid seekers. As people who can't cope. Even though Drs created the problem. 13/14

I've coped with more pain in my life than you can imagine. More that you'll ever experience. And I'm expected to shut my mouth about it. I'm expected to force myself into inaccessible uncomfortable situations all the time. Because you don't care to change it. 14/14.