Any hEDS patient can relate to the difficulties of chronic pain; besides the physical limitation, there is the mental. At least for me! If I can’t control my joint pain, I want to bitch and complain and talk about it ….
I guess that helps somewhere, but along comes the guilt:
- feeling guilty about annoying your friends and family by sounding like a broken record!
- feeling that instead of complaining about ankle pain, I should be thankful that I can walk cause some people don’t even have ankles that could hurt.
- or guilt that I’m not dying of cancer, and I should be thankful for that instead of complaining about joint pains!!!
I often wonder what the trigger for this guilt is!? Someone in constant pain deserves some comfort somewhere, so we shouldn’t be afraid to talk about it!? And is a life of terrible chronic joint pain really better than dying quickly of cancer or whatnot? In no way do I want to compare who has it worse in life. I think we all struggle to a degree with our challenges! Why do we look down on chronic pain and often consider these patients drug-seeking? I guess one reason could be that pain is subjective. It’s not measurable. The pain scales vary by the definition of each individual. Sure, as a medic I have some markers like vital sign changes I can look for to gauge the pain in a patient, or obviously if the patient has an injury, I can see what causes the pain. Chronic pain, however, I typically leave alone as a medic. I won’t treat chronic pain patients with pain medicine unless there is a good reason, like aggravating injury etc. Chronic pain should be managed by a pain management specialist, not by 911. And this is another great example of my zebra body and medical brain ….. I don’t even have a chronic pain management doctor, nor am I any good at managing chronic pain as a patient! I gave up on it cause most meds and/or anything else doesn’t really work anyways. Still, the medic in me and probably so many other medical professionals don’t really care or understand this!
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