The alphabet soup of chaos happened this morning with the BBC Breakfast interview about IBD and fatigue. Click here to watch the brief video.
This morning when I first found out about this interview, I had high hopes with my disease getting international attention, but was disappointed to find out that the BBC Breakfast hosts didn’t really know much about anything at all. The hosts claim right off the bat that doctors blame “too much junk food and antibiotics” to be the cause of genetic autoimmune diseases. I spent the rest of the time scratching my head at anything that these so called specialists had to say. The only ones I felt like I could really trust were the ones they interviewed with Crohn’s disease (Liam Ruff) and ulcerative colitis (Rachel Flint). They seemed to be the ones most prepared and knowledgeable about their diseases.
Consulting Gastroenterologist Dr. Sally Mitton jumped straight to attacking the “junk food lifestyle” of younger people, what with the jump from nearly 5,000 hospitalized cases to nearly 20,000 within the past 10 years. Excessive use of antibiotics were attacked by Dr. Mitton as well, but I know for sure that that’s not the case with me. I lead a healthy, athletic, and active lifestyle as a child. Figure skating, weight lifting, good work ethic, and other extracurriculars were the main part of my grade school life. Days off were a luxury and not even my weekends were spared. I was indeed a very picky eater, and still am, but I was and am able to maintain a nutritional balance.
The worst thing that happened to me health-wise before I was 20 was getting tonsillitis, which ended up with me getting my tonsils, adenoids, and my sinuses reshaped at age 11. Other than that, I’d gotten the yearly cold and/or stomach bug just like the average person. The possibility of genetics being more of a cause of autoimmune diseases were not discussed in detail at all.
What I’m really glad what ended up being addressed was the general embarrassment of the disease. Yes, it’s taboo to discuss your bathroom habits, especially if you’re a girl. I’ll be the first to admit that it’s still a bit embarrassing. The word “colon” is even one of my cringe words. Colon, large intestine, ulcers, bowels, polyps… Ugh.
This sense of embarrassment led to about two months of silent suffering before I could even tell my mother what was going on with me. The day I broke down, she had been telling me a list of chores I needed to get done (laundry, feed the dog, do the dishes, clean my room, etc.), but I was as nauseous as if I had just tumbled out of a washing machine, had a 100 degree fever, and still had homework to do! I also knew that since I didn’t have any health insurance, not much could be done other than what I was already doing: the over the counter treatment. Unfortunately, or maybe this can even be considered fortunate, I had a blood test done several months down the road that gave a reading that forced my first ulcerative colitis related hospital admission which led to my initial diagnoses.
Fatigue is also mentioned in the interview and it’s explained a lot better than anything else due to the fact that they turn to the people with Crohn’s and colitis to describe it. A deep bone fatigue where you can hardly get out of bed and having to sleep on the floor of your bathroom because you’re too tired to walk back and forth from your bed is a familiar feeling to those with IBD. This is another way to describe The Spoon Theory and the idea of spoons like I talked about yesterday.
I’ve been fighting against the stigma that this is an embarrassing disease. Hell, thanks to Lance Armstrong, testicular cancer is being taken seriously now. (No offense to those with testicular cancer. I’m just saying.) I’m always open to answering questions about how I live my life day to day. I used to be quiet about it, but just a few weeks ago I was able to admit to friends why I can’t eat almonds or carrots.
It’s because they come out looking the same as they came in. It’s a fiber thing.
Overall, I’m really disappointed with how these so called medical specialists handled this interview by blaming it on the young people who suffer daily by their supposed food choices and failing to mention any other possibilities of these awful diseases. This could’ve been handled much more professionally if more research had been done. The fact that not much are known about autoimmune diseases is no excuse if you’re planning on doing a full scale interview in this manner.
I’m glad Dr. Nasrullah Manji is my GI specialist and not Dr. Sally Mitton. I’m glad Rachel Flint was there to set the record straight at the very end and say that despite the fact that she has ulcerative colitis, she maintains a relatively healthy diet. I can only hope that someday that those with Inflammatory Bowel Diseases will get the proper public awareness that we deserve.