There is probably nothing worse to me than being disbelieved. When someone questions my credibility regarding my own health I find myself filled with rage.
My sister and I had gone to a Urologist at Mass General recently for a 3rd opinion. My usual Urologist suggested it and his office set up the appointment. It was less that fruitful. My sister was making a fist and ready to slap the woman by the time we left. The Doctor had no answers, shook her head and said “Jesus Christ” while looking at my CT scan. It was like we weren’t even in the room. She also said “What a Goddamn mess!”. She was looking at my scans and test results at the time. So she really did not want to take on my case. She actually said “I really don’t know what you expect me to do”. I thought, hmmmmm, BE A DOCTOR MORON!!!
When my usual Urologist didn’t get notes from her office his staff called to ask me how the visit went. I told them everything. I was then asked if what I was saying was factual. The nurse then asked if she could call my sister to corroborate my “story”.
I was livid. My account of the situation wasn’t to be believed but if my sister confirmed it then it would be. I wondered of they did this to every patient or just the ones with Bipolar Disorder at the TOP OF THEIR CHART. I didn’t have Kidney Failure or Chronic Kidney Disease listed first on anything it was always Patient is Bipolar.
I don’t know about anyone else but I find this offensive. I am truthful with every new Doctor I meet. I tell them that I am diagnosed as Bipolar and the meds I take. It’s important for them to know so they can make the right decisions medication wise. I don’t tell them so I can be treated as inarticulate, obtuse, or delusional.
I know immediately when this will happen because people have a habit of speaking louder to me. Because I’m deaf, dumb, and blind? I do have a little trouble hearing but that’s selective, I do wear contact lenses and can only see my hand in front of my face without them. But dumb? Nope. Just the opposite.
My dad didn’t understand the problem. I asked him how would he like it if his Dialysis Center called me to verify if what he told them was true or not. If he really had a UTI or was he just being dramatic. He understood then.
My sister finally understands because I force her to come with me to as many Doctor appointments as I can. I’ve often thought of bringing in a tape recorder but my sister thought it might be overkill. She did say I would probably have had grounds for at least a few lawsuits if I had in the past. I was surprised she admitted as much.
At least all of this has brought my sister and I a little closer. It’s a start and I’ll take it. My sister didn’t always believe at times either. Once she started coming to the Doctors with me she started to understand. It started with the first time. The time she grabbed the Doctor by his white coat and in a calm clear voice told him in no uncertain terms that I would “never be filmed like some circus freak for you and your colleagues to get off on and we were leaving” and by the way “f*ck off”. It was in that moment I loved her more than anything.
I’m lucky I have at least one advocate for me. I think of how many of us do not. It brings on the rage, tears and frustration. I try to educate people but if they already think they know everything, it’s impossible. I love it when people try to tell me about Bipolar Disorder. Like I haven’t researched the thing to death already. The ones who encourage me to go to Church are the best. I want to tell them I’m an Atheist or follow Anton LaVey but they probably wouldn’t get my sense of humor.
Plus I’m unbelievable. I like to think in a good way, like something so fantastic you just can’t believe it. How’s that for delusional?