In his video “The Slow Death of Compassion for the Chronically Ill,” Ken McKim theorizes that one reason compassion for people with Chronic illness are being saddled with unrealistic expectations due to the prevalence of inspiring stories. I was just talking to a friend about the fact that mainstream writing about people with disabilities is only ever presented as positive or inspiring.
I’ve become increasingly upset by the overwhelming amount of posts on a Facebook IDB (Inflammatory Bowel Disease, aka Crohn’s or ulcerative colitis) group that are either prefaced or appended with an odd sort of disclaimer. The script is becoming so common that I’m wondering if I missed a borg-assimilation software upgrade. The details may vary, but it usually looks something like this:
“Sorry for the rant, you can ignore this post and it won’t hurt my feelings but I needed to get this off my chest! I am in so much pain, it feels like my insides are on fire. I’ve been waiting for my doctor’s office to call me back for 3 days. I’ve been curled up in bed for days and vomiting almost non-stop. Then my boyfriend made a joke that I was just being lazy to avoid doing the chores! My mom says it’s all the chemicals in my diet and I just need to go vegan to be cured. My coworkers are starting to complain that I’m not pulling my weight at the office. No one understands! Anyway, sorry to be so negative… Tomorrow is another day and I’m sure I’ll get over this funk by tomorrow! :)”
This happens in real life, too. Most people feel so uncomfortable with expressing facts or true feelings that could be seen as less than inspiring, that they must couch them in dismissive language. It can be common for people with invisible illnesses to “pass” as healthy most of their lives. I have done this for nearly all of my professional life and as much of my school life as possible. Extended hospital stays, Prednisone-induced moon face, and other issues are often the only things that force me to disclose anything to new friends or coworkers. I’ve benefited a lot from this, but one downside to keeping this major aspect of my life under wraps is that I sometimes desperately need to speak openly with people who understand. Speaking openly allows me to feel as if an actual weight has been lifted off my shoulders. Even when I am talking about distressing things, I usually feel much better after getting it off my chest, and being able to drop the metaphorical mask I wear.
I am not a good cover girl for your advocacy marketing. Throughout my 20 years of chronic illness, I have had nearly no remissions. In fact, the biggest success I’ve had is breaking the cycle of needing intestine surgically removed every 3 years. Things that the very sick would consider successes – earning my undergraduate degree along with my peer cohort, continuing to be employed full time since graduating college 11 years ago, earning my MBA degree while working a demanding job – are not really the types of accomplishments that land you a guest spot on a national talk show. One of my personal favorite accomplishments has been not becoming a shut in, despite severe illness and subsequent anxiety that has made that task a daily struggle for the past 9 years. No one is handing out trophies for “Leaving the House.”
We need to move away from the aggressive positivity that makes everyone else feel safe and secure and start speaking up about our personal truth. Facts are not rants. You can be a strong, wonderful person who can still acknowledge that you sometimes (always?) have it rough. Just continuing to live each day, and keep on living, is often an incredible accomplishment. We need to be kinder to ourselves and more appreciative of what we are able to endure. The world needs to hear our stories, even if they don’t always have Hollywood endings.