getting a chronic illness or disability diagnosis is fucking hard
and doctors don’t make it any easier than it could be. i’ve been in a chronic illness support group for a while and these are some things i’ve learned that helped me get diagnosed with POTS, ME/CFS, hEDS, and fibromyalgia.
fucking hound them. be on their fucking case. they want you out of their office and the next patient in. they (mostly) do not care. make them take you seriously, preferably while being polite. cussing out your doctor will get you nowhere except kicked right back out of the building.
do not let them send you home empty handed. if they try, say, “can i get in writing on my file that you won’t be pursuing this issue any further?” or something similar. make it be made public they’re not doing their fucking job. AT LEAST make them order blood tests for you. THIS IS ONE OF THE MOST IMPORTANT THINGS.
lie about water intake if you have to. if you say anything other than, “yes i drink the recommended amount of water daily”, they shut you down immediately. you won’t even have a chance.
(obviously doesn’t apply if you drink like one cup a day, increase intake for a few weeks before your appointment just to be sure if this is the case. however if you don’t keep track or drink a little less/inconsistently, a little fib could be the difference between getting a diagnosis or not).
DO NOT LIE ABOUT SYMPTOMS THOUGH. you have to be honest about them. do not exaggerate them for the sake of getting the diagnosis: if you have to lie about and exaggerate symptoms to get a diagnosis, you have to consider that you may not actually have the condition.
keep track of your symptoms. write down things like what time symptoms start and end, what you were doing, how you felt in your body at the time symptoms started, where in your body symptoms were felt, did anything make them go away/ease them, literally anything you can think of. read through the diagnostic criteria of the condition you’re suspecting and apply them to your symptoms.
in the same vein: journal everything. things like daily water intake, vitamin intake, diet, exercise, pain or symptom levels, sleep duration, sleep quality, etc. do not give them ANYTHING they could say “have you tried XYZ?” to. plus, if the symptoms turn out to be caused by something “mundane”, the journal can help doctors figure it out quickly without cycling through dozens of things.
be confident. if you’re not certain on what you think you have, doctors will jump on that uncertainty and give you a bogus excuse. they sniff out anxiety like bloodhounds and will act on it. do not give it to them.
get second opinions. asking another doctor never hurts. if they’re a good doctor, they will go by process of elimination, going through simple things like dehydration and low vitamins, upwards towards your suspected condition. this is often REQUIRED to get diagnosed with disabilities/chronic illnesses, but it is okay if you feel like your doctor is stalling and you want to get through the process faster. THIS IS WHY THE JOURNAL IS IMPORTANT ALSO.
i hope someone finds this helpful
i’m sure there’s other things that i should add, but my brain is foggy right now and i’m having trouble getting all my thoughts down (despite planning and drafting this post).
if any other disabled and/or chronically ill folks have tips for getting doctors to fucking listen, by all means add them to this post.
