One of the toughest elements of suffering through an auto-immune disease is invalidation. No one enjoys that! It’s hard enough having a chronic condition during a global pandemic with an economy in tatters and social isolation the new norm. Throw in a friend suggesting you’re “exaggerating how bad it is” or promising you, glibly, “it will all work out” only makes you feel that much lousier.
That said, at times we think we are being invalidated when this is not the case. It is easy to misread others. After all, many of us have been invalidated frequently. Hence, through no fault of our own, we expect the worst.
Friends were similar. “It must be something you ate,” they’d say. (This is not the case, of course, when you have IBD).
Seeking answers and validation from a doctor
Not sure if it was lingering effects of all that, but, six years ago, when in my gastroenterologist’s office, I expected the worst and got upset at my doctor unnecessarily.
I’d been having some symptoms that no medicine could adequately treat. I’d attempted quite a few drug therapies and, while my Crohn’s was mostly under control, I still wasn’t as healed as I’d wanted.
My doctor suggested my symptoms might have resulted from abdominal adhesions from my prior surgeries, but, just to cover his bases, ordered more tests. Meanwhile, after he stepped out to take a call, leaving my medical files on his desk, I could not help but sneak a peek at them.
I couldn’t believe it. The tone was a bit abrasive and dispassionate, which, I realized later, was just the way doctors communicate in medical reports. More to the point, to my great dismay, he referred to my symptoms as “idiopathic.”
I read through some more dense terminology, before, a few pages later, there was that word again—“idiopathic.” I felt so mad! What right did he have to call me an idiot? My symptoms weren’t because of a lack of intelligence, were they! I’d graduated from Cornell University, hadn’t I? I wasn’t some crazy idiot making it all up!
Of course, later that night, when I looked up “idiopathic,” I learned it actually meant a disease of unknown origin. Ooops. Maybe I shouldn’t have raised quite such a fuss.
The origin of my symptoms really was unknown. Then, too, it wasn’t exactly a crime against humanity that he’d suggested another colonoscopy, was it?
Feeling heard and listening to others
This was an instructive day. I realized that many times people aren’t invalidating us we just read it that way. Knowing all this made me feel better. I didn’t quite have such a chip on my shoulder. I could listen more to others—even if I strongly disagreed with the often deleterious advice they gave
In sum, it’s really too bad that Crohn’s sufferers are so often invalidated, for, the truth is, we really endure quite a bit. We deserve to be taken seriously, listened to, and treated with dignity.
That said, we also really need to listen to others, take them seriously, and make sure we are not misreading what they are saying. Sometimes we are not being attacked in the way we think we are.
Thanks for reading, and, as always, I look forward to your commentary.
Does exercising regularly help in the management of your symptoms?