I had what may be just the first uncomfortable conversation with my GP yesterday, and it kind of went like this;
Patient: I brought you a whole folder with bullet points and everything.
Doctor: Oh Great! (looks through the list of requests) Can do this one – send doctors notes to Shepherd Center. Now what exactly do you need in the way of accommodations; just so I can document (I’d told him in great detail already via the patient portal. Clearly he missed the part where I said it took too much energy to remind him over and over again because I’M ILL, OK????).
Patient: You can see here that I have to prop a pillow in my wheelchair and there’s really no neck support and that doesn’t really work so well, the center of gravity in this chair is very small focused all on my butt and my weight needs to be evenly distributed because sitting in this thing aggravates the spasticity and my gluteus muscles and trapezeus muscles, the muscles in my legs, and neck and back get really stiff and I really need to be able to be in a reclining position because gravity just kills my muscles and it’s agonizing.
Doctor: OK. Well here’s the thing. There’s the objective and the subjective (this is when he pulls out a piece of paper and starts drawing a circle and then another circle around that one with a bunch of s shapes floating in the larger one). Dr. V. did feel you have something wrong neurologically (motioning to the inner circle).
Doctor: But…(as he starts to motion towards the outer circle), she feels that you have emotional stuff too going on out here. So since several neurologists have said things about emotional stuff I really have to only look at objective data like tests and that kind of thing. With these neurologists feeling there’s emotional stuff going on your patient reports of symptoms; things such as nausea, spasticity, pain etc. can’t be taken as a given now. The fact that Dr. V. says that you do have something neurological going on isn’t enough. Until you have a neurologist that says there’s nothing emotional going on I can’t accept your word about these things. That is the challenge (he interrupted himself) No I really don’t know if that’s possible (implication being he would never believe me no matter what). She doesn’t know how much of it is one and how much is the other to be able to tease that out.
Patient: Aren’t you setting up an impossible standard here? My Piedmont vitals record clearly had objective data showing the Dysautinomia. What’s wrong with that?
Doctor: Well that’s subjective. I have 40 pages of blood pressures from home health here that have normal ones (which I kind of doubt since the nurse was taking it just once or twice a week and the period was about 6-8 weeks I think). The only test I know of is a tilt table test (he wrote down “will consider tilt table test”).
Patient: How is that subjective? It’s raw data! That’s ample proof! I gave you another copy with asterisks to the left of everything flagged! (It became crystal clear at that point that what he really meant is because it was mailed to me and provided by me it must not be legit. Well he can order his own copy sent directly to him if that’s what he was implying. Things were becoming insulting at that point in the conversation). Taking blood pressure one time once a week isn’t going to pick it up!
Doctor: I know. Modified Barium swallow; I can do that. TMJ MRI; can do that. What kinds of problems are you having that you need the MRI for? (also a repeat of what I put in writing on the patient portal).
Patient: It’s dislocating to one side or the other and sometimes cracking when I open my jaws.
Doctor: OK. IV Saline; No can’t do that since there again the other symptoms besides blood pressure you’re reporting are subjective. I’ll contact Daria myself to see what home healthcare can provide. Vascular testing and testing for Mast Cell Activation is pretty much bogus; No. IVIG; your IGG level was OK so insurance probably wouldn’t pay for that.
It went on like that for awhile; the upshot being that he was nitpicking on every single thing and as far as treatment absolutely nothing new came out of it.
I still can’t get over the fact that he made that statement saying he couldn’t take my word for any of my subjective symptoms now that he thinks I have some emotional thing on top of the neurological thing.
So in other words I’m being considered mentally incompetent? Last time I checked that was considered stigma and discrimination and that’s a human rights issue!
I had told him that yes I may have secondary trauma due to being abused throughout this process, but it’s nothing that necessitates this sort of gate-keeping and not a reason for him to not take me at my word.
In that case I guess I can skip all the paperwork I’m supposed to fill out periodically asking about my symptoms since he doesn’t believe me now. Apparently it’s not valid because it comes from me.
I came home and have been really crushed by this whole thing and I don’t know how much longer I can tolerate this. He is going to give me a mental illness pretty soon at this rate. I’m through proving myself. If he wants any more proof he can order more tests. Otherwise I expect these things done.
This is totally humiliating and I have done nothing to deserve this level of cynicism.