Other People’s Opinions of IBD
In the ten years since I was diagnosed with IBD and IBS I’ve had a lot of people give me their thoughts and opinions about “what my problem is and how to fix it.” Most people tell me to eat more fiber, others have told me to just remove all the stress from my life (why didn’t I think of that), while some have even told me that I’m making it all up and I should just move on.
If I’m objective, I can understand these opinions. People want to be helpful. But they don’t really want to understand, exactly, what the problem is. And if they can give me their opinion then they figure they have helped me and they can move on.
But, if I’m honest, rather than objective, these kinds of nonsense, malarkey opinions actually irk me. I don’t go around telling people who have rheumatoid arthritis to just get over it and learn how to open a jar already. Nor do I tell people who suffer from migraines to stop eating chocolate and drinking red wine and move on with their life. This would be absurd. Just about as absurd as it is for people to tell me to eat fiber and live completely stress-free.
The other evening one of our neighbors hosted a holiday pot luck. My husband and I live in a fabulous neighborhood. Everybody knows everyone and we all get along famously. It’s a little like a Norman Rockwell painting come to life. But this night was a little different because it was the first neighborhood get together for me as a gluten-free eater. Since I knew it would be really hard to eat at the pot luck I had a light dinner before we went over to join the group. At the party I had a small glass of wine and nibbled a small piece of peanut brittle, but nothing else.
I was dumbfounded when one of these neighbors suggested in front of a whole group of people that she was getting concerned about me and my anorexia.
“Anorexia.” I said, with a laugh, “What are you talking about?”
“Well,” she told me, “you’ve always been so thin and now you don’t eat anymore. I’m really worried.”
I assured her that I was not anorexic. I weighed the most now that I had in ten years. And that I wasn’t eating because it was too hard for me to tell what had gluten in it and what didn’t.
“I ate before I came,” I said.
“Well, I’ll have to give you the name of my nutritionist. And she’ll help fatten you up.”
I then tried to explain that because of the IBD as well as the gluten-intolerance nutritionists were not a lot of help to me.
“They all want me to eat legumes, raw vegetables, and many other foods that set-off my Colitis. I know what I can and can’t eat, and I assure you my doctor and I are in agreement about my treatment.”
But, on my neighbor went. Telling me that I wasn’t eating right, or exercising enough (because at 42 apparently I’m really old now and have to work out six days a week if I want to be healthy and live past 60), and she was going to get me in shape. I finally had to say thanks, but I know what I’m doing and why I’m doing it and walk away.
This is the third time in my life that I’ve had people accuse me of being anorexic. The first time was in high school when my gut issues first started. At the time the doctors found nothing and labeled me with a spastic colon (old world talk for Irritable Bowel Syndrome - IBS). But at the prompting of a teacher, my guidance counselor took it upon himself to call my parents and tell them that he and this teacher believed that I was either on drugs or anorexic. So, when I got home from tennis practice my parents sat me down (this was 1983) and asked me if I was doing drugs. I told them, “No,” but they searched my bedroom anyway. When they didn’t find any drugs they then asked me if I was anorexic. Again, I told them, “No, I wasn’t, but I was sick to my stomach most of the time and the medicine the doctor gave me for my gut wasn’t helping it. And I just felt better if I didn’t eat.”
The second time I was accused of being anorexic was about six months after I had been diagnosed with Colitis in 1999. I had lost a huge amount of weight in those months and I looked really gross at a mere 94 pounds (I’m 5 feet 7 inches tall). I knew I looked gaunt and gross, but I was working hard every day to try and figure out what I could eat that wouldn’t send me to the bathroom. It was during this time that I did my first Elimination diet – see my Sharepost about Elimination diets here - http://www.healthcentral.com/ibd/c/2623/92582/elimination-diet. Anyway, one of my neighbors (a different city and a different neighbor) took it upon herself to host an Intervention for me. She invited me to her house for happy hour. I wasn’t drinking, of course, but thought it would be fun to get together with some other women. When I arrived I was told it was an intervention and they had found me a counselor who specialized in anorexia. I was shocked. When I recovered my voice I told these women that I didn’t have an eating problem, I had a pooping problem and I doubted they, or their counselor, could help me with it. I then promptly left.
I guess my whole point in this Sharepost is that it’s nice when people want to be supportive, but it’s annoying when they just assume they know what your problem is and to fix you. If I had not minded spilling my whole story in front of any of these people I could have told them that my real problem is a pooping problem. That the colitis can cause severe diarrhea. That I can go to the bathroom 10, 20, even 30 times a day when things are really bad. That many nights I actually nap on the bathroom floor just because it’s easier to be that close to the toilet. That I have to think about and watch every single morsel of food that I eat. That there is not one day that I don’t think about my gut, where the nearest bathroom is, and if I have to go will I or won’t I make it to the bathroom in time.
I could tell these people all these things and more. But, why? Will they actually listen to me? Just hear me out, then say, “Wow, that sounds really difficult but you seem to be handling it quite well.” I don’t think so. I think they’ll hear the gross parts, but not that I have it under control and know what is best for me. And they’ll still just sit there and tell me to eat more fiber and get rid of my stress.
Okay, fine, maybe I’ll just try that.
If you would like to read my whole story you can read my book, “Living with IBD & IBS: A Personal Journey of Success”. www.ibdandibs.com