From the very beginning of my diagnosis with ulcerative colitis, I’ve noticed a consistent reaction from many people. It comes in many different forms, but the following are the most common examples.
“Can’t you eat more fiber? That’s good for your colon, isn’t it?”
“I read in All-Organic Colonics Weekly* that psyllium seed can help with ulcerative colitis. Why don’t you try that?”
“Your medication makes you feel tired? Why don’t you try drinking coffee? Or caffeinated tea? Or soda? Or Red Bull?”
“You forget to take your pills? Why don’t you try a weekly/daily/hourly pill box? Why don’t you take them with meals? Why don’t you tie your pill bottle around your neck?”
People like to give advice. I put this down to that they want to help, or to their desire to better understand the disease. It’s their way of whistling in the dark. Funnily, I (usually) only hear or see this type of reaction from people who are physically healthy. They try to imagine what they would do were they in the same situation. The only problem is, they can’t. You really do have to live with a chronic disease to understand how it affects every facet of your life, because it becomes part of your life and part of you. It’s hard to effectively and truly imagine that kind of thing. (Maybe Dustin Hoffman could help, but I think he still might miss it a bit.)**
My problem with this? Is that in most cases, when I get this advice, I’m not looking for it. I am bitching. I’m whining. I’m complaining about how this stupid UC screws with my life and how I haven’t adapted to it as cleanly as I’d like. I don’t do this often, I promise. But when I do, I’m not looking for a session with a nutritionist or my gastro – I’m gagging for sympathy and hugs and humor, damn it! And most of all, I resent the implication of the advice, the You haven’t thought of this, have you? It’s the unspoken, quicksilver judgment that I’m not doing everything to help myself and am therefore somehow culpable.
Listen. This might be particular to me. But I READ ABOUT MY DISEASE. I do all the research I can. I try new things when I can. I think about trying new things or finding loopholes for problems when it’s not possible to do them. I experiment with my diet and medications, sometimes at detriment to my health, so that I don’t get too accepting, too complacent with my limitations. The things you suggest? The ones that seem so obvious to you? Guess what? They’re obvious to me, too! I have thought of these things because I’m not a mindless, apathetic sack of tapioca. Sure, you might come up with something I haven’t; I can accept that. But it smacks of some serious arrogance to know nearly nothing about a disease yourself and then give health advice to someone who’s been living with it for seven years.
I suppose I should mention what pushed me into writing this.
Loren Berlin writes columns at the NYT about ulcerative colitis. For the most part I enjoy them; they can be short, but she talks about stuff that I think about, like giving blood or eating at Mexican restaurants. But while this column inspired my sympathies and interest, it also made me think about advice and the way we shower it on people:
For one thing, my experience with online IBD support groups*** has shown me that they are usually populated with some really sick people: people whose UC or Crohns will not calm the hell down, or people who have to take some hardcore med like Remicade, or people who end up in the emergency room every other weekend. In Berlin’s columns she talks about her UC being in remission and controlled with azathioprine. (Yes, I bitch about azathioprine all the time. But honestly. There are worse medications you can be reduced to taking.) These are the people she describes:
There was a gaunt, hobbled man in his late 20s who had recently filed for disability status because he was too sick to work. There was a high school girl who sat silently, her eyes glued to the floor, her jeans hanging from her hips like gunnysacks, while her mother explained the many and varied treatments that had failed to induce remission in her daughter. There was a woman seated beside me whose intestine had perforated during a layover in an airport while on a business trip.
Ouch. Very visceral. (Heh. Visceral. I’m sooo funny.) When Berlin offers exercise advice to the first man, he reacts negatively and shoots her down. She writes: He looked at me as he spoke, simultaneously resigned and defiant, challenging me to suggest something else so that he could tell me why it wouldn’t work.
Up till this point in the article, I was very sympathetic to Berlin’s state. The first flush of UC is such a shitty time; it’s depressing, you’re in pain, there’s blood everywhere, your life is upside down, you’re never going to be able to eat or walk or travel normally again, you’re going to die of colon cancer sooner than anyone you know, and really, a black bean and cheese burrito with hot sauce and jalapenos would be so comforting, if you could eat it without bloody craps and cramps. It sucks. But when I got to that paragraph, I thought, Huh? This isn’t a problem to solve. It’s a support group of people who should understand. He’s bitching. Let him bitch a little. I wondered if maybe Berlin felt that in comparison to him, she was healthy. Probably not. But I know I feel downright healthy and lucky sometimes when I read posts on curecrohns at livejournal.
For the record, I don’t think Berlin’s a jerk or without empathy. I love that she’s writing about UC in the New York Times. Yay, publicity for commercially-unpopular diseases! Here are some links to her other columns I’ve read:
– Surgery for Ulcerative Colitis Is a Difficult Choice
– In Fleeting Health, Moments to Savor (This one really reminds me of the way I felt following my most recent flare)
– When the Body Decides to Stop Following the Rules
– Never Able to Forget a Chronic Disease
So to get back to it, what can I say here, without coming across as resigned/defiant/overly sensitive/bitchy(too late)? Think before you advise, folks. Sure, I might be overly sensitive, and you might just be trying to help. But think about what you’re saying and how your advice can come across as condescending or patronizing. As a lady with UC, I need a good bitch about it every now and again. If you’ve got any particular personal problems that you want to bitch about – ones that I couldn’t understand since I don’t live with them – then maybe you do understand how I feel. Let’s get together and have a margarita. I’ll try to think twice before I regale you with my personal opinion on how best to treat your bipolar disorder.
In Devil Pred news: I’m down to 20 mg of prednisone! So far, no flare relapse. I’m keeping my fingers crossed.
* Not a real magazine. Sorry.
** If you don’t accept that, then there’s always The Spoon Theory. I think that still works as an excellent visualization technique for someone who doesn’t have a chronic disease.
*** Which might be different from RL ones, I accept.