For Chronic Illness Patients, Why Is It So Hard to Say 'No'?
No! Arguably, “No” is one of the most popular of the first words that babies learn to speak. It’s a simple one syllable word. It’s easy to say and easy to spell. “No” gives us a definitive answer to many questions asked, and is a clear reaction to many actions. “No” is really a gift to the English language; so why do so many of us have such a hard time saying it?** Denial**
Step back in time with me to where I was a 25-year-old who was almost five years into a multiple sclerosis diagnosis and fresh off a new ulcerative colitis diagnosis. I was in the prime of life: working a full-time job, in a long-term relationship, a homeowner, and an avid traveler. But as UC started to dig its claws in, doing “normal” activities — leaving the house, going out to dinner, or going to a bar — became a lot harder. Still, I almost never turned down an invitation to go out.
Why? One word: Denial.
As a chronic illness patient, especially a young one, it is so easy to deny the truth about how you feel and what is happening to your body. No one wants to admit that they are struggling or that their body is giving out. I pushed myself to some terrifying limits and ended up in the hospital over 10 times. Denial can be a dangerous reality for many people with chronic illnesses, and while some denial is normal and even acceptable, denial to the point of relapse or hospitalization is just stupid.
Trust me, I know.
It was 2010, Lady Gaga was in town, and I was two weeks out of step 2 of my J-pouch surgery — a surgery that requires a six to eight week recovery. Still, I decided that I was not missing that concert. I wasn’t capable of walking very far at the time, I think I still had staples in my incision, so I had to call the venue to make arrangements for wheelchair transport from my car to my seat and back again. By the time I got to my seat, I was overheated and sweating. My whole body hurt, my incision was on fire — but I made it. I was not missing out. I slept the entire car ride home — and for most of the next two days — but I saw Gaga.
Fear of missing out, or FOMO, is a real thing. As a social being, the idea of my friends doing something really cool without me totally bummed me out. Going to that concert was stupid. Risking infection or more injury was stupid. But I created all kinds of justifications for going: a chance to see my friends; who knew when Gaga would come back; I felt fine, etc. The FOMO was so overwhelming that I could have devised any justification, no matter how ridiculous, to be there.
In 2009, I planned a reunion with some friends with whom I had studied abroad while I was in college. During the same trip, I also planned an extensive tour of amusement-park roller coasters with my boyfriend of the time. But about two weeks before this epic trip, I was diagnosed with UC, and was in the bathroom about 20 times a day. I was miserable. I thought about backing out of the reunion, but these were people I hadn’t seen in years. I could have handled the guilt of cancelling my reunion, but I felt overwhelming guilt for cancelling the roller coaster trip. I knew it was important to my boyfriend. So we went.
We went to four different parks in four days. Or rather, he went to four parks; I went to three and spent a few hours puking in a Starbucks bathroom while he completed the fourth. I suffered in a bathroom because I felt guilty asking him to immediately start driving the 500 miles back home. As a result of going on that trip, and neglecting my body, I spent more than a week in the hospital. The guilt of letting someone else down was something I wasn’t willing to deal with. But I should have.
Tired of missing out
I repeated my Gaga-concert behavior again a few years later, but this time for a far less interesting Kid Rock concert. I ended up in the emergency room. To say that I learn things the tough way would be a correct statement. But at that point, I had been through multiple surgeries, I was gaining some strength back, and I was tired of sitting on my couch. I was tired of being tired. And I was so bored. I decided to get up off my couch and head to a concert with friends. I even showered, an act that required about a 20-minute recovery time. I put on real clothes and make-up. I desperately wanted to feel like a real person — until we were tailgating in the parking lot and I felt a knot in my intestine. I pretended like it wasn’t there for a while but before the show even started, I was headed back to the emergency room to deal with a partial blockage.
Chronic illness patients know what is best for them. They know their limits and they know when they’re pushing their bodies too much. But why do they still go past their limits? Yes. And why? Denial, guilt, FOMO, and being so tired of missing out on life. Saying “no” to everyone and everything, time and time again, is discouraging. Sometimes you just want to feel like a real person. But remember: when you’re feeling antsy and need to have some fun, it’s OK to push yourself. Just do it responsibly. Don’t be a dumb-dumb like me. Take care of yourself!
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_Jackie is an ulcerative colitis patient and the founder and Executive Director of Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community, and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page. _