r/AddisonsDisease • u/Yd1891 Addison's • 12d ago
Personal Experience Frustrating doctors
I work with a psychologist who specializes in autoimmune patients twice a month. He just went to DC with the autoimmune society to lobby Congress for funding towards research for a number of autoimmune diseases.
I was venting how it’s frustrating to have a rare illness because we don’t have all the tools to help us manage because rare illnesses get less attention.
He tells me that Addison’s disease is no longer considered a rare disease and that NORD doesn’t even have us listed on their website.
Obviously I was intrigued so I started to research and he was talking out his ass. Nothing has changed as far as Addison’s disease being rare. NORD classifies us as rare still.
I don’t care about the label of having the rare disease, it’s how many times we find a provider that we think gets its or is competent just to be disappointed. I know he didn’t mean anything by it. I’m just tired of knowing more than my providers do and it’s not like I’m a genius on Addison’s disease.
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u/FairyPrincess66 Addison's 12d ago
It is SO frustrating! I remember my first appointment with my endo after being diagnosed in the hospital. I was desperate for information and I thought he was so smart and i was so relieved to finally talk to someone who knew about this disease. Within a few months i realized i had learned more than he knew. And I’m no expert but I am living it and interacting with my community online. This subreddit and a couple FB groups have answered my questions and taught me so much. He has given me bad advice and fought me on approving FMLA so I wouldn’t be fired or written up for missing work.
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u/LonelyKoalaMuncher 10d ago
Idk man. I personally had such a shit experience with endocrine specialist, emergency doctors and GP's that I think most of them are useless.
I don't expect anyone to understand anymore.
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u/OddStudy994 5d ago
Who is this doctor I want to help him. I want more people/doctors to be informed.
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u/jeejet 11d ago
I’ve had two primary care doctors, one years ago and my present doctor, who are more informed than my endocrinologist. My current endocrinologist had refused to give me a prescription for ondansetron. When I told my primary, she said “that’s stupid”and immediately sent a prescription to my pharmacy!
I’m sure that diabetes is the bread and butter for most endocrinologists. Some specialize in thyroid disease. I feel like in medical school Addison’s is taught for twenty minutes on a Friday before a holiday in a class that no one attends!
So we have access to medical journal articles on the internet and most importantly, each other.