Coping | Daily Life | IBD
I wasn’t surprised when the doctor entered the room as I was waking up from my colonoscopy anesthesia and told me I had severe ulcerative colitis. During the painful, sleepless nights I had spent on my bathroom floor, I had earned the self-proclaimed title of “Avid Google Symptom Searcher.” After hours of Google searching, I narrowed my potential diagnosis down to either Ulcerative Colitis, Diverticulitis, or Colon Cancer; none of which sounded “better than the rest” to me at all, but I had accepted the fact that one of these three ailments was going to be my fate. To be clear, I don’t recommend spending hours on Google symptom searching.
A few weeks after my doctor gave me my momentous diagnosis and told me that my colon looked like it had been stabbed repeatedly with a butcher’s knife and I quote, “Been through hell.” I started to rapidly lose weight. I had been losing weight for two and a half months prior to diagnosis but during the first few weeks after my diagnosis, I lost 20 more pounds. I was down to 90 pounds and before I got sick, I had been 140.
One weekend, I was at my grandmother’s house visiting her and helping her with breakfast. She squeezed my arm and said, “You look really good. This is the perfect weight for you.” My BMI was 15. To put things in perspective, a healthy BMI is 18.5 to 24.9 and it’s actually healthier for IBD patients to be on the heavier side, because we can lose weight quickly during flares. Prior to diagnosis when I was healthy, she told me I was overweight, so this hurtful comment didn’t help my already-skewed body image. But, the 90-pound, sickly me was “perfect”, according to her. “You look like a supermodel,” she said. I don’t pretend this didn’t hurt. I didn’t think that things could get much worse but the comments kept coming.
After the weekend spent at her house, my grandmother didn’t waste any time calling each of her friends and our extended family to tell them the nitty-gritty details of my new “glamorous” illness and how thin I was now. She did so under the pretense that she was concerned, of course. Personally, I think she just wanted to gossip. I don’t hold any animosity towards her for what she did, but each time I would speak to someone she told, they asked me intrusive questions about my bowel movements; this was especially the case during family dinners. Each individual she had told loved to provide me with their “professional” solutions and answers to “cure” this disease that they claimed to know so much about. “You should take more vitamins,” one said. “I read about a guy who cured his Crohn’s Disease by drinking tea,” another exclaimed. “There’s no cure for IBD,” I responded each time and they looked at me like I was poor, sick, and confused. After a while, the false pity really eats at you.
A month or so later when I called my mother on the phone to help me with a problem with insurance, she said, “This is too much work. The blood in your stool is no big deal. I’ve had that before and it went away on its own. Don’t you think you are being a bit dramatic?” I wanted to ask her if she had heard what the doctor had also said about my colon being “one of the worst he’s ever seen,” but I kept silent. The fear of those around me thinking I was dramatic and trying to get attention had kept me from seeking help for months until the doctors said I would have died from anemia if I hadn’t gotten to the hospital the first time. Now, I felt like an even bigger burden.
Words can hurt. We all know that the old “sticks and stones” saying is false. I believe these futile comments and hurtful words that are so commonly and casually spoken to those with IBD come from a lack of education. It’s important for family members, friends, and even other IBD patients to watch what they say to those with these diseases. Unfortunately, there may not be much of a change unless those of us suffering speak up and educate the individuals around us about the importance of kindness, discretion, and sensitivity. Lately, I have learned to become less apologetic when I tell someone that their words hurt me. Sensitivity when asking questions or making comments is key. We aren’t against questions or comments, but we want them to come forth in a respectful manner.
Thanks so much for this post. I relate so much. I know family members and friends mean well, but their comments can really hurt sometimes! It makes me feel better to know other women with IBD have experienced similar issues. Sometimes I feel too “sensitive.”