Tired of Doctors Calling Me Unusual
Last updated: February 2023
I've learned a lot about the medical profession over the years and here in the west, they are trained to look at numbers on tests for everything. If your numbers don't fit into a textbook range, or they can't somehow document a reason for your pain, well you're screwed, my friend.
Advocate for yourself
My advice is to study like crazy and go doctor-hunting. I can't count how many times I was told there was nothing wrong with me and because I'm female they inferred I was overreacting to try to get attention. When doctors can't find your diagnosis they like to think you're a hypochondriac rather than acknowledge their inadequacies. It's enough to drive you insane. So after a good cry out of frustration, get your butt in gear and take on the role of being your own personal medical advocate. Keep copies of all your medical visits and tests and really be able to cite those numbers because in the 15 minutes of an appointment, they really don't read them.
You will face people even in your own family who don't see why you keep pushing to find answers. Ignore them. Nobody on the face of the planet knows what your body feels like better than you. You are the professional in that area. Keep remembering also that doctors are people you hire to be on your team, if they don't hear you, move on.
Now when you do find someone caring enough to help, (and I recommend they have Eastern as well as Western medical education) show up ready to work and don't waste the time using them as therapists. Write your concerns down in advance. Mention tests in past that have ruled things out or been inconclusive. Ask about tests or conditions you think may be relevant. Don't be shy or apologetic. It's your body and you have the right to participate in finding ways to heal it's pain or disease.
For decades no one could diagnose me and gave me the worst possible advice until a gall bladder surgeon woke me from surgery to exclaim my intestines were riddled with white cells from Crohn's disease and that I needed another surgery for a stricture right away. How was it not found earlier? Because no one ordered the appropriate tests after not seeing the tell tale numbers of inflammation in my regular bloodwork. I was "unusual" that way. My chronic ability to not have my numbers fit into anticipated ranges has continued to keep me from getting proper health care.
The second most hated quote I hear is, "You don't need to test for that, it's very rare. Besides, you're too young (fill in other descriptors here). You'd know by now if that was an issue". That kind of thinking kept me from being diagnosed with chronic reoccurring tonsilitis till I was 30. More recently, they were surprised when a test I pestered to get came back positive for Hashimoto's Disease of the thyroid. I wasn't surprised. I felt relief to get the necessary medication against my own body attacking itself. The thyroid affects so much in multiple systems of the body as well as mood. It's shocking. I've tied to explain the effects of Crohn's and Hashimoto's disease to my bewildered family members but unless you loved biology classes in school like I did, it's tough to grasp.
What is the average time it takes to get accurately diagnosed with a rare disease?
Beyond the diagnosis
You may think that finally getting accurate diagnosis documented and all would instill compassion and regret over not believing in your pain, but don't count on it. I've found that if you were the caretaker, or strong shoulder people leaned on to support themselves, they want you to continue doing so and in their time of choosing. Here's the thing about multiple auto immune diseases though...to get better, you must reduce stress. For me, that meant giving up the pressure of deadlines in the business world, getting much more sleep, eating a special diet, hydrating well, and extracting myself from other people's personal dramas.
I now love yoga, meditation, doing arts and crafts, hanging out with animals and nature and cooking delicious soups, stews and roasted root veggies. I've embraced being unusual and feel proud of it. I encourage others to do so too and I genuinely believe that in the future, this time will be looked back upon as ridiculously sad for the lack of individualized medical care. Try as hard as some might, not everybody fits into the designated cattle chutes of western medicines stockade style clinics and ERs.
Not done yet
I wish you well in your personal advocacy. My current self enriching projects are getting the insurance company to pay for insulin that works on my diabetes rather than the cheaper one and getting documentation together to be tested for Cushing disease. Yet another diagnosis that could drastically improve my health and life with the proper care.
Unusually yours- H.A.B.
How do you feel about your support system?