I went from my everyday “yes sir, this is quite unpleasant, this is some very bad pain here, sir,” constant-heating-pad-use, never-able-to-wear-pants pain to “I want to scream and throw things, BUT THAT WOULD JUST HURT MORE”, unable-to-sleep-or-eat, not-even-able-to-wear-underwear pain. My bladder was tired of all the stress, all of me trying to push myself to do “just a little more, come on, this shouldn’t be so hard,” and it decided that my very strict diet and Elmiron doses weren’t enough. Neither was the heating pad. Neither was the ibuprofen, or the emergency hydrocodone. Coriander tea, which has by far been the most effective pain reliever, could only do enough to keep me from totally losing it.
Thankfully, my urologist came through for me and prescribed some new emergency pain meds for me to use. I’m having another hydrodistention under anesthesia, which should reset my pain to at least a tolerable level, next week.
Except I’m starting to wonder what “tolerable” really looks like.
I’ve been suffering from severe fatigue for the past seven months—though it had been building up for at least three years—along with tremors, muscle weakness, and a loss of balance that can’t really be explained by the fibromyalgia or the interstitial cystitis diagnoses. For the past few months, my energy has been so limited that, in order to get an hour or so’s worth of clear thought a day—just to be able to write a blog post or two!—I have to spend the rest of the day in bed doing little but watching TV. Every action on my part means extreme sacrifice, because I have so little to give in the first place. Think of the Biblical widow’s mite, but, like, way less inspiring.
At my last appointment with my physiatrist, though, I finally heard something that made me realize I’ve been going about this all wrong.
It was the concern on the doctor’s face that caught my attention. Doctors usually look so put-together and unemotional, so seeing her look at me like that, like my problem was serious and important and heartbreaking, made me listen more carefully.
“The fatigue doesn’t exist all on its own in a bubble,” she said. “Many factors contribute.”
“I think the pain is causing a lot of her fatigue,” said my mom, who has been coming to appointments with me as an advocate, so that my brain fog doesn’t keep me from addressing all the important issues. “Pain is just really wearing!”
“You need to start treating your pain,” the doctor said.
It’s always annoyed me when people use good things like forgiveness or optimism or strength as an excuse to not face reality. Too often, people act like problems will go away if you just smile at them. But ever since I got diagnosed with fibromyalgia when I was sixteen years old, I have been grinning and bearing it just as badly as the next fool.
When you’re living with something chronic and incurable, that kind of ignorance is an important coping mechanism. If chronically ill people were to look their symptoms directly in the face 24/7, if they were to tell themselves, “In no way is this acceptable,” they would not be able to live their lives. With something like this, you can’t expect a miracle. You have to lower your expectations for comfort and health. You have to ignore the symptoms as much possible so that you can continue to live your life around them.
But I’ve become too good at that.
My interstitial cystitis is the clearest example of that. For three years, I’ve had episodes of extreme pelvic pain, which then fade out to a level that I consider tolerable—but which is actually a sign of continuing damage. I wasn’t diagnosed until the pain became so severe that I wouldn’t respond even to tramadol, and I got that diagnosis in part due to intuition. I went to a gynecologist first, understandably desperate for help. I didn’t get any, not from him, but he did mention IC in passing.
“But you don’t have any burning or pain while urinating,” he confirmed.
“No,” I said confidently.
Some instinct told me to pursue that diagnosis. It wasn’t until I got diagnosed and had a hydrodistention done under anesthesia that I realized I’d actually been experiencing severe burning pain while peeing. When I went to the bathroom afterwards, literally urinating blood as an aftereffect of the procedure, I looked down and thought, “Am I actually peeing? Is this what peeing is supposed to feel like? How can anyone tell that they’re peeing if it feels so… not painful?”
IC isn’t the only example of this. For years, when I’ve gone in to a doctor with a complaint, they’ll ask, “When did it start?” and I’ll have no clue. I only know that right now, today, it’s too much to bear. Similarly, a month before I got diagnosed with IC, I had an ingrown toenail that had to be numbed while the doctor cut the edge out. When the numbness kicked in, I started giggling and couldn’t make myself stop. The doctor was amicably bemused. My mom actually asked if he’d somehow given me laughing gas on accident. (He hadn’t.) Lack of pain, anywhere in my body, was such a novel sensation to me that it seemed like a strange, glorious unreality.
“It’s so quiet,” I kept saying. “My toe is so quiet.”
All of those incidents should have been a warning to me. But I have become a master at ignoring the signs.
Really, it’s no wonder that my function has become so low. I’ve been saying, “I can deal with it, I can deal with it, I can deal with it” until my body finally hit the ground. I’ve been so angry at it for torturing me, but never once thought about how much I’ve been torturing it. Just because I’m not screaming doesn’t mean that I’m okay.
Part of it is psychological. For years, I’ve thought of myself as weak, lazy, ineffectual, pessimistic, and overemotional. Even after successful treatment for OCD, which caused me to view myself as the most stupid and pathetic creature alive, my first response to being bothered by something is to call myself whiny. Cruelty, misogyny, and ableism have all cemented that idea in my head. But it’s past time for me to overcome it.
So here’s my new promise to myself: I’m going to stop ignoring my symptoms. I’m going to face the pain, and I’m going to start seeing the forest instead of just one tree.
My new motto will be "I am not okay. I am not okay. I am not okay." Because if I'm really going to get help, I have to remember that. I have to be willing to share my reality. I have to stop ignoring my problems just to keep up a good face, and be honest instead.