When I was first diagnosed, my doctor said two things at that first appointment that I couldn't stop thinking about.
The first was: “I’ll be honest with you and tell you I’d rather treat someone with bladder cancer than interstitial cystitis.”
The second was: “Hopefully you’ll learn to manage it and this won’t be any more bothersome than, say, tennis elbow.”
The other thing I remember is that he kept looking at my chest—so often that I finally glanced down at my blouse, sure I had a button undone (thank god I never had to get undressed for that appointment).
Call me judgmental, but when I see a guy who can’t stop himself from doing this—or at least hasn’t bothered to develop covert scoping skills—he may as well have a loudly-buzzing neon sign hanging around his neck that blinks: Asshole…Asshole…Asshole….Asshole…
Somehow, this was even worse because Dr. M was young and good-looking. I tend to forgive older guys more readily for this kind behavior for some reason…guess I figure they don’t know any better or can’t help themselves.
Now, I know doctors are only human beings, but when you’re a woman dealing with a problem that involves your privates, this kind of attention from a handsome doctor your own age is a recipe for immediate, absolute, abject embarrassment.
Please just be a doctor, goddammit, I remember thinking.
Later, I made the mistake of mentioning Dr. M’s behavior to a friend of mine who worked as a nurse in the urology clinic with Dr. M.…the same friend who’d saved my life when she told me to see a urologist after I’d suffered for months with what our family doctor kept telling me was just a tenacious bladder infection.
“Oh yeah, that’s Dr. M….” my friend said knowingly, rolling her eyes, when I told her about the thorough ‘breast exam.’
“Next time, I’m wearing a coat,” I said, with some spirit. And I did…thankfully, it was wintertime so I had an excuse for keeping myself draped in Polartec when I went to my next appointment. But I noticed right away that Dr. M. was keeping his eyes unnaturally glued to my face, and I knew my friend the nurse had tattled on me. She had probably thought it was funny.
My face flamed. I wanted to die, die, die, die, die. After I killed my friend, that is.
Other than this little anecdote, Dr. M’s two comments at the first appointment also stuck with me. I know doctors see a bunch of patients each day, so comments like “I’d rather treat someone with cancer,” are probably throwaway remarks for them. Who knows, he’s probably said the same thing a hundred times.
For a patient, though, when you find out you have an incurable disease and that you’ll be living with chronic pain for the rest of your life, it’s a bit of a watershed moment.
So is it surprising that my doctor’s dumb comments, like his boneheaded remark about tennis elbow, would get replayed over and over in my head? Uh, tennis elbow? Well, if you have tennis elbow, can’t you just not play tennis? Now, I may not be a medical doctor, but last time I checked, most of us don’t have the option of not using our internal organs.
And as far as his comment that he’d rather treat someone with cancer… I know he was trying to warn me that this wasn’t going to be easy and that there really wasn’t anything he could do to help me, but maybe I should’ve said, “Excuse me for making your day more complicated, Dr. M., but I just drove 90 miles for the pleasure of your company. Also, I’m paying you $300 for this consult, so could we pretend for a few minutes that this is about me… not about your need to feel effective as a doctor…?”
And on the one hand, the dude is telling me this is like tennis elbow, and on the other, he’s telling me it’s worse than cancer? Talk about mixing your metaphors.
Interstitial cystitis is one of those poorly understood “industrialized western world” diseases like Crohn’s, and nobody’s sure exactly what causes it. Basically it means your bladder lining is compromised, so your body has lost its protection against the substances in your pee.
This means that IC patients stick to a weird diet in an effort to keep their urine to as neutral a PH as possible so the open sores in the bladder don’t get more irritated. For people like me, who love tangy food (hell, I even used to have a lemon tree in my house) it’s very, very difficult to be “good” every day and avoid anything that’s acidic.
Dr. M. also might have warned me that the diet would be social nightmare and that I would need to develop some coping strategies in advance. I can’t tell you how many times I’ve tried to gracefully negotiate the mine field of a buffet table at a social event, when not eating the salsa and the enchilada main course gravely offends the host. “I’m sure they’re wonderful, but they just don’t agree with me,” I’ll say politely. “Oh, you can have just a little…”
And what am I supposed to say to that? “Sorry, but I have a diseased bladder…?” Talk about killing the dinner conversation.
Probably the thing that hurts the worst, though, is that even close family members forget what I can’t have. Most of the time they bend over backward to accommodate me, but when they forget, I get my feelings hurt even though I know it’s not their job to remember all the things on I’m not supposed to eat. If I was going to be a manic stick-to-the-diet person, I wouldn’t remember all the stuff I wasn’t supposed to eat either. The list is that long.
The biggest challenge for me was to overcome my anger about my diagnosis. One of the most difficult things about so-called “limbic” or organ pain is that it tends to make people extremely crabby, which didn’t exactly help. (If you’ve ever had abdominal surgery, you’ll probably know what I’m talking about.) So it was really easy to get really upset over all the little things I had to give up. My beloved Meyer lemon tree was one of the first things to go…it was an angry baby-with-the-bathwater move on my part, but all the tree was to me when I was newly diagnosed was a symbol of what I couldn’t have.
About a year after my diagnosis, I remember reading a story about some kids in med school who had just been to their first human cadaver dissection class. The interviewer asked them for their impressions, and all the students agreed that they were greatly humbled by what people were willing to put up with in order to stay alive just a little longer. One of the students even got a bit emotional when describing the extent to which one cadaver's abdominal cavity was filled with cancer. Even their instructor had expressed amazement that the woman been able to live so long with so many growths pressing on her internal organs. Nobody had any doubt she had suffered incredible pain for months at the end of her life.
Sure makes me look like whiny piker, doesn’t it? And what about Mrs. Dubose, the great character in To Kill a Mockingbird, who kicks her morphine addiction at the very end of her life, at the very time she needed the painkillers the most?
Time won’t heal all wounds, unfortunately, but it makes the ones we have to live with easier to bear. The pain eventually becomes like an old friend that shows up on your front porch every morning, a guy you nod to out of a kind of begrudging respect because you know his appearance means at least you’re still alive and ambulatory. And time is necessary for developing perspective: the appreciation for the good things and the understanding that others are suffering far worse trials.
So I can forgive Dr. M. for being human. It’s the least I can do—besides wearing a coat to my next appointment, that is.