The frustration of not having a diagnosis
I’ve been dealing with a myriad number of physical issues since I was a pretty young teenager, but I just can’t get doctors to actually listen to me and believe that I’m telling the truth, much less finding any treatments or even having a name for whatever is wrong with me. I’m so sick of feeling horrible all the time, having no energy, constantly getting injured, and always being in pain, but at this point, I’ve pretty much given up on ever finding a doctor who’ll actually believe me. I can’t afford to look around for new doctors; I’m on state-provided low income insurance so I don’t have much of a choice in who I see, and beyond that, I’m also trans, which makes it even harder to find providers who’ll actually take me seriously and listen to what I have to say. My life is a complete trainwreck, I can’t keep a stable job because I physically don’t have the energy to do so, and I can’t access any kind of real support or even be able to explain why I can’t do so much just because I don’t have an official word for whatever it is that’s wrong with me. I know this is far from a unique situation, and I shouldn’t complain so much, but god, I’m just so tired of it all. I doubt I’ll ever actually find a medical professional who’s willing to believe what I have to say about my own body and experiences at this point.
I completely understand your frustration. You must feel so vulnerable, invalidated, and maybe even hopeless.
I have a mild form of a condition that causes constant pain and chronic injuries. Hypermobile joint disorder. I have to carry pain meds everywhere. People at my work know I'm the guy to ask, lol. I have allll the otc pain meds. I also keep an ace wrap on me at all times for "emergency" support, kt tape, and have a hip and knee brace in my car.
Nobody believed my chronic pain growing up. When I started developing arthritis in my leg my mom took me to a doctor who basically told me to just deal with it or have a painful, probably unsuccessfully surgery. Wtf.
I hope you have good medical luck, eventually.
Thank you so much for the reassurance. While I don’t know exactly why I am, I’m very hypermobile too, and I can definitely relate to being the guy who always has OTC painkillers and joint supports on hand — if doctors won’t help me, at least I can sort of help myself lol
So, I obviously can't diagnose, but I can tell you how I manage my hypermobility pain. This may sound a bit infuriating, because the advice is so common, but hear me out. If it is hypermobility causing your pain, exercise focusing on strength training is really helpful. I get physical therapy once a year or so. My most recent physical therapist joked it's like preventative maintenance on a car.
I'm not sure how accessible physical therapy is for you, but you can do a lot of this stuff without them with some at home research. If you do this don't worry about cardio, and don't throw yourself all in. I try and do 20 minutes a week. TRY, lol.
A body pillow helped me with hip pain. Tens units are also helpful.
Another thing to note is that hypermobility is often paired up with a disorder called postural orthostatic tachycardia syndrome (POTS). This disorder is getting a lot of attention these days because it can be caused by long covid. I was able to get mine diagnosed by basically harassing doctors with my own supporting data, lol. I got a heart monitoring watch, which showed my heart rate was consistently different depending on if I was asleep, awake but lying down, sitting up, standing, and of course walking. My heart rate is never below 100 beats per minute.
I know I just said go buy a bunch of stuff and you indicated that you're on a low enough income to get government insurance, but my overall point is... Keep shaking down these doctors, maybe bring up some of this stuff as possibilities if they sound familiar, and you can do a lot at home to manage hypermobility pain. I, unfortunately, have had to deal with a lot of invalidation.
sigh. Yup, I do find it to be an exhausting, on-going process. I am cis, so at least that's something that makes the process a bit easier. We're here when you want to vent!
