During the last sixteen years, if you had asked me “what is the hardest thing you have ever gone through,” I would have said, “Mom’s hospice.”
That changed this year. Now I would say, “Gary’s rash.” And I know that sounds ridiculous, but here’s the difference: Mom didn’t lie to herself. She believed her doctors. And ultimately Mom acted in her own interest.
Gary, on the other hand, trusted his doctor at first, but now has locked himself into a bunker of self-delusion and thinks the doctor is against him. (I can’t tell you how often I have asked him, “The doctor said those actual words?” only to hear that no, the doctor said “some nonsense meant to scare me.”) He’s so determined to be right that he is not looking out for himself.
Why? I mean, the easy answer is that he’s a cranky seventy-year-old man, and he doesn’t like someone else knowing more than he does. But in my heart I worry he’s like Mom and he wants the universe to know that he will leave when he feels like it.
7 responses to “Hardest thing I have ever done”
… people who are determined to be right drive me absolutely up. a. wall. under normal circumstances, and more so if I care about them and they are screwing up their own health (or if they are screwing up the health of someone I care about, see also my dad being sloppy about disease transfer protocols while my mom has only parts of her lungs functioning).
So, yeah, I can see that.
That said, I think what you have said about Gary’s reaction, i.e. the refusal to have Another Thing that requires medication be wrong with his body and the refusal to consider that he might be reacting *to* one of his long-term medications, does not suggest to me that he’s willing to sign off yet. He may be too tired to cope well, but that’s a long stretch different from being so tired you’re willing to die over it.
(so cantankerous you’re willing to insist you are Being Right and staying sick instead of accepting doctors’ orders and doing the things and therefore getting better: … that’s a separate question. But. Doesn’t sound anywhere near that.)(ALSO honestly I have known so many doctors who were really quite wrong at this point; some of that is gaps in their training or new medical advances that occurred since their training; some of that is the nature of Being A Female Patient and therefore some doctors sometimes not taking me seriously or believing me about symptoms; but also some doctors are just kinda… not great… unless you hit them with the *exact* stuff they know a lot about. I do not think there is enough information to conclude Gary’s doctor is a dud, but it is a remote possibility at least.)
KC – I think what’s happening is that the dermatologist is ruling out anything fatal. It is an allergy, and he isn’t saying, Go to an Allergist, Gary does not appreciate that. I suppose he can’t die from something that he’s had for a year. There is something he could have died from that is a very fitting diagnosis, but he would have been long gone.
Ruling out anything fatal is *good* but also we would like some symptomatic relief thank you very much…
I am not sure how helpful an allergist is for the Really Weird allergies in skin-manifested form, tbh. They can do the default prick tests, but there are *so many* things to possibly be allergic to out there…
KC – He’s just so impatient. I think watched me get the shortest diagnosis in the history of MS, and of course his epilepsy didn’t call for a lot of tests. This is just a hard one. Luckily he does have a very convincing rash, otherwise he’d be said to be faking it for attention.
Fair. It is honestly really hard, when you’re used to the medical system working decently well and rapidly (and the people around you likewise have that approximate expectation), to find out that… oh. It works like that with one set of things and… not so much… with many other things. The distance between expectations and reality is a layer of frustration and emotional turbulence that frosts the top of “we would like this to get fixed NOW THANKS” that already exists.
(but also yes, MS is usually not a speedy diagnosis! How did you manage that?)
KC – I lucked out and the first specialist I saw, the gastroenterologist, was also a general physician. His second question was “do you have MS?” Then he said other telling things like “you need better insurance” and “You need to get a general physician” and “you need an MRI of your brain.” It made it easy for my new GP when I had my second exacerbation a year later.
Oh WOW. That is impressive, and also very neat, and also… sigh. Insurance.
(also I am SO GLAD that treatment has worked so well for you!)