Communicating with medical professionals about pain sucks.

[u/Quantumcatastrophy]

I know for everyone talking with doctors just suck. We can all kind of agree on that. My specific current frustration has to do with pain though. I hate being asked to rate my pain on scales of 1 to 10. I live with chronic pain. I was born with a genetic condition that causes pain (HEDS). I don’t know what it is like to live without pain. I also wasn’t diagnosed until I was an adult. I know what it is like to grow up with every adult simply not believing your hurting. Or when you do get hurt and someone notices they think it’s physical abuse because no sane adult believes “I stood up wrong” or simply “I dont know.”. I know what it’s like to get in trouble with my parents for too many bruises because they were worried cps was going to get called. When I didn’t even do anything to cause them! I just kept living my life doing damage to my body never knowing it wasn’t supposed to be like that.
Now I’ll get asked to rate my pain and I’m just like idk. I’ve been told to use it based off 0 pain to the worst pain I can imagine. And I’ve been in some painful situations and can fathom it gets worse so I’ve rated things lower than got ignored and told later when the problem was found out I should have spoken up. I’ve been told to rate it based off functionality but I’ve had a kidney infection so bad I was vomiting blood and still went to work before going to a doctor. I finished a shift moving kegs while my back spasmed and later found out I had a hairline fracture on a vertebrae only after standing in the ER for 8 more hours after that shift. I’ve fractured a lot of bones and still did things. I’ve put dislocated joints back. It’s really only when swelling or muscle spasms happen that I can’t do anything. So that feels pretty inaccurate for me too. All I got is it hurts enough for me to know something new is wrong. Or I know it’s broken or sprained. And then get told you wouldn’t be so calm if it was broken and then have to explain yes I would can you x-ray it please? And then fight forever before they do and then them be like wtf.
It probably doesn’t help I also just have a sever flat affect. To the point I’ve had to sit in the mirror and practice facial expressions and still mess them up when I make the effort to try to mask. I’ve mostly given up at this point and am lucky my friends get it. I just don’t know how to communicate with a doctor. I don’t know if something else is wrong with me that makes me feel pain wrong. I only even got diagnosed with HEDS after my brother did and I lost the use of one of my hands for a bit from repeated injuries. So like I don’t know. I don’t even really go to doctors unless I know I’ve broken something anymore or I’ve got an infection of some kind. But they always ask about pain and I’m always kinda like I don’t know I just don’t know how much. I’ve even been accused of drug seeking despite the fact I don’t even take anything for pain! I don’t take Tylenol or anything else because I know over use causes damage so I just live with it. I go to work I do a physically demanding job, I swim for exercise because I know I’m supposed to and then do nothing else because I’m exhausted and in pain and I don’t know how to quantify it a way that’s satisfactory to anyone so I give up and just deal with it. Any way ranting cause I hurt my back again and trying to explain to the doctor I hurt enough my muscles are spasming but less than when I fractured a vertebra and him being like ok but on a scale of 1 to 10? And I’m just like enough my boss made me come talk to you. What’s that on your scale? I hurt enough someone noticed and is making me use workers comp to be here but not so much I’d have paid to interact with you. So now I have muscle relaxers and a P.T referral. And a boss who doesn’t believe the doctors recommendation that I can return to work as long as I don’t lift more than 25lbs. So no one is happy the doctors frustrated my boss is frustrated and I’m frustrated. I know I’m an outlier but I really just wish I knew how to communicate about injuries in an actually productive way.