What the fuck is it with doctors and their egos?! I can’t tell you how many times I’ve gone to a doctor with a problem and suggested what I think it might be or what tests I think would be a good idea based on my symptoms and what I’ve found in research and talking to others in various support groups or online forums focused on specific medical issues (i.e. people with real experience dealing with certain conditions instead of just reading about it at some point in medical school), just to have that “medical professional” write me off as some sort of psych case and refuse to take me seriously. NEWSFLASH ASSHOLE: not everyone who does “research” is a damn attention-seeking hypochondriac. DO YOU WANNA KNOW HOW MANY TIMES I’VE BEEN PROVEN RIGHT?! Sometimes I am wrong, and when I am, it’s ok. I don’t get upset. I’m happy that I’ve gotten confirmation that what I was worried about isn’t the case. The thing is, though, that I usually am right, and if I’m not, I’m at least closer than the fucking doctor was in the first place. BUT, since I’m the patient who “doesn’t know what she’s talking about”, I have to submit to their suggestions first and go through this whole rigamarole of unnecessary tests and medications that only make things worse (because they’re THE WRONG FUCKING MEDICATION) just to have them finally order the test or suggest the diagnosis I originally suggested. WHY. THE. FUCK. can they not just accept that I might be incredibly in tune with my body and highly intelligent, knowing how to do proper research and objectively seek answers that actually explain my problems? Why do they have to assume EVERY. FUCKING. TIME. that I just want attention or drugs? WHYYYYYY is it so hard for doctors and nurses to set their bloated egos aside? Yeah, I know you spent several years and thousands of dollars on your education. Yeah, I know you have a medical degree, and I don’t. Yeah, I know you have experience in the medical field, and I don’t. That doesn’t mean I’m lying. It doesn’t mean I don’t know my body. It doesn’t mean I can’t come to you prepared with appropriate knowledge about what I’m experiencing. It doesn’t mean I’m wrong. It doesn’t mean you should dismiss my thoughts simply because you’re not the one who came up with them. It doesn’t mean I’m not smart enough to know what to rule out and what’s actually possible or even likely. I knew a year ago that Ehlers-Danlos fit the bill for all my medical issues, but I couldn’t suggest it to anyone because my experiences told me that as soon as I said the words, every doctor I saw would set out to prove me wrong. I’ll say that again: EVERY DOCTOR I saw would SET OUT TO PROVE ME WRONG. And why? WHY?! Because everything a patient reads just fills their head with misinformation? Because my problems are psychological? Because I’m faking symptoms so I can convince someone to give the the diagnose I want? WHO THE FUCK WANTS A DIAGNOSIS OF EHLERS-DANLOS SYNDROME?! Yeah, I understand there are people out there who do let their need for attention take over or who let their anxiety convince them that things are much worse than reality. But seriously, look at everyday interactions outside of the doctor’s office. Look at statistics for the kinds of psychosis and neurosis that cause that kind of behavior. Is that shit common? NO. NO, IT IS NOT. So, why the FUCK do you prefer to assume that’s the case when a patient comes to you already thinking they know what to look for? Why is it so hard to just be grateful for someone who actually just saved you some work? Maybe they’re wrong, but all you have to do is run the test for whatever they’re talking about and prove them wrong. Then you move on to whatever else might explain what they’re dealing with. But no, because their egos are so damn fragile, doctors have to exert their authority and “put the patient in his/her place”. You think this power play is going to make us trust you? No, your refusal to listen and treat us and our intelligences with respect is going to make us hate you. In fact, this experience is so common among people with “invisible” illnesses or hard to diagnose or rare medical issues that most of us spend YEARS suffering and hating doctors before we get the proper diagnosis and treatment. Many wish they could just give up altogether, but they can’t because they’re suffering too much to not seek help. And how sad is it to you, “medical professionals”, that so many people suffer so much and harbor so much hate for doctors all because they’re not taken seriously? If I were to have a chat with any nurse or doctor about some person who suffered through years of misdiagnoses and mistreatment before finally receiving the appropriate care, you’d be condemning the doctors who weren’t helpful. But then you never accept the possibility that you might be one of those doctors who got it wrong. You never accept that you might be the one making a mistake and causing more harm instead of helping. Your oath includes doing no harm, yet so many of you are so stuck on how much you sacrificed to get your degree and title that you cling tightly to your superiority complex and refuse to accept that some patients actually know what they’re talking about when it comes to their own bodies. You know, it’s the primary complaint among the EDS patients I’ve come across that doctors don’t believe them. Of all the problems an EDS patient faces with their condition, their biggest issue is how hard it is to get people to take them seriously.

I’ve suffered with migraines for years. It’s gotten to the point where I have a permanent migraine – it feels like someone stuck a spikey rock in between my ears, and there’s immense pressure in my head at all times. Pair that with the trouble swallowing, syringeomyelia, brain fog, and other autonomic issues I face, and what explains it? Craniocervical instability. Basically, all the connective issues that hold the skull in place start to fail, and it starts to collapse onto the spine, causing the lower part of the brain and brainstem to be compressed into the spinal canal. Now, I hope to God that isn’t what’s going on, but I’ve read at least half a dozen articles about it FROM REPUTABLE SOURCES OF MEDICAL INFORMATION – that includes medical journals and online reports, not just WebMD crap – and it fits PERFECTLY. It explains SO MUCH without conflict. So, having remembered an offer from my Endocrinologist to refer me to a specific Neurologist that I didn’t accept at the time, I called to ask her for the referral to look into it. She initially refused. I had to call back and remind her of the offer and get more aggressive than I was comfortable to get the referral, and when she finally agreed, she sent it as “migraines” and not anything EDS or autonomic dysfunction, as if to tell me she didn’t believe what I was telling her, even though I did my little ‘hypermobile demonstration’ for her last time I was there, and she knows about my blood pressure and previous seizure issues (part of EDS but in my case, caused by a medication I shouldn’t have been on). She’s even been one of the most compassionate doctors I’ve seen, and I still had to fight to get her to take me seriously. Now, maybe I’m wrong, but how will I know for sure that there’s something else causing this pain if no one takes me seriously enough to order the tests? And something like 1/15 EDS patients eventually face some level of this. That’s a lot. That’s almost two people for every classroom full of kids if every one of them had EDS. Now, craniocervical instability itself is pretty rare, but it is not an uncommon thing among EDS patients. However, assuming that someone fits in the more common statistics because something is rare only makes it that much harder for people who actually have that condition to get the diagnosis. And beyond that, this is something that should have been diagnosed by one of the three previous neurologists I’ve seen. But guess what. They didn’t take me seriously enough to believe me when I said that I think fibromyalgia isn’t the correct diagnosis. Neuro #1 didn’t even believe me when I told him I was having seizures and refused to run an EEG until I threw a fit about it. Even then, he only ordered a quickie in-office one that didn’t show anything because it wasn’t long enough. Neuro #2 did the longer test and found not just seizures but nystagmus as well. Neuro #3 started my very first appointment by giving me a lecture about being a “doctor hopper” – someone who jumps from doctor to doctor until they get the diagnosis they want. Surprise, she wrote me off as a psych case because she couldn’t come up with a fitting diagnosis.

So, really, what is it going to take? What do I have to do or endure to put the proof out there that I’m not fucking crazy or lying or attention-seeking or drug-seeking? I want to get better. I want to improve my quality of life. I need help figuring out what the fuck is actually going on with my body so I know how to improve my situation and be more of a person and less of a burden. I want to function. I want to perform regular everyday activities that everyone else takes for granted. I want to think clearly. I want to live with out constant excruciating pain. What do I have to do to prove that what I want is help and not pity or attention or pills? What the fuck is it going to take for people like me to get the respect and support we so desperately need from the only people who know enough to actually be helpful? Am I not deserving of your best? Are we not deserving of a stronger effort from you? Are we who have rare illnesses not important enough? Not smart enough to know our own conditions? What do we have to do to stop you from making us feel invisible, invalidated, discarded? How do we stop you from scoffing at us? How do we get through to you? How do we prove ourselves worthy of your time and attention? How do we prove our integrity to you? How do we get out of this ‘guilty until proven innocent’ mentality among doctors that has us all lumped into your hypochondria assumption?

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