Speaking Our Truth About Chronic Illness
Can we reveal more about our illness experience?
Posted Mar 15, 2018
You may have seen medication advertisements on television in which beautiful people are gardening, walking on a beach with a romantic partner, and tossing a laughing child into the air. As the montage rolls, the radiant actors gush about how much this particular medicine has improved their lives. At the close of the commercial, an eerily soothing voiceover informs viewers that this medication may cause a series of side effects akin to bizarre torture and perhaps even death. “Who would put that into their body?!” you may have thought. (Raises hand). Me. Last week
I had my first infusion of Stelara last Friday. It’s a biologic drug that turns down my overly eager immune system. Like other biologics, it has a long list of potential side effects and scary pictures that pop up from a Google search. I last tried a biologic drug in 2011, and it worked great until I developed horrific side effects after a year of success. To put it mildly, this fiasco was so awful that I vowed I’d never poison my body again. So I used a bunch of stop-gap measures (prednisone, limited food intake, and sporadic hospitalizations) that barely held me together before requiring surgery in 2013. This surgery created major complications that took over a year to resolve. Again, to put it mildly, not a great period of my life.
The results of my most recent colonoscopy (I get one every year - another fun fact of life with Crohn’s Disease) showed disease activity such that my doctor urged me to take action. I had a choice. There was Option A - I called it “a rock”; and there was Option B - also known as “a hard place”. Option A was to begin Stelara; Option B was to do nothing. To start Stelara would be to attack the disease and (hopefully) stop it in its tracks. It also would be to risk grave side effects. To do nothing would be to eliminate the risk of these particular side effects but allow the disease to diminish my quality of life, ultimately leading to surgery and presenting a different set of risks. What was a girl to do?
For the first time in my life, I told my close friends about my anguished decision-making process. I chose to reveal the details of my dilemma instead of saying breezily, “Probably gotta start a new medication; wish me luck!” I painted a picture for them: “This is what it was like when I had a medication reaction. This is what it was like when I had surgical complications. This is why I am so paralyzed by this decision that I can’t sleep at night. This is who I am right now.”
My friends listened closely, asked for more information, and empathized with my fear. I felt seen; I felt heard; I felt understood. One of them looked at me with sad eyes and said, “I had no idea.” This struck me as important. How was it that I’d kept so many of the details of my experience from her? She knew I had Crohn’s Disease, but she didn’t know what that meant in terms of my lived experience. She didn’t know because I hadn’t let her in. I’d made the decision to keep her and everyone else in my life at arm’s length when it came to my illness. I am trying - little by little, disclosure by disclosure - to rectify that.
For the longest time, my illness self has lived on an island protected by a moat. With each moment of honesty, each word of revelation, each attempt at vulnerability, I am building a bridge that crosses the moat and connects this island to the outside world. With each positive experience, the bridge gets sturdier. My illness self can cross it and interact with other people; others can cross and find me when I can’t leave the island of illness. I now have company. I am not alone.
When you've lived on the island of illness for a long time, it can be hard to know how to start building that bridge of connection. If you would like to explore this, I’d ask that you take ten minutes and write a letter to a friend or relative of your choice. The subject of your letter is “Things I Wish You Knew About My Illness.” Don’t think too hard, and don’t worry about your handwriting or spelling. This is not a letter to be sent unless you choose to send it; it’s really for you, so just let the words flow. When you’ve finished writing, put the letter away for an hour, a day, a week. Then return to it and reflect on what you wrote. What surprises you about your letter? What feelings come up when you read it? What would be the easiest part of your letter to share with the addressee? What would be the most difficult?
It may hurt to write this letter. It may feel risky to put into words the things that feel so vulnerable that they have to live all alone on an island. But here’s what you’ve done in taking pen to paper: You’ve created word-bricks with which you can build your bridge crossing the moat that separates you from the world. You’ve started the process.
If I were making a tv commercial in favor of speaking the truth of illness, I would portray ordinary people going about their lives. They might say, “I feel less lonely.” “I feel sturdier.” “I am not invisible.” The voice-over would not warn of dangerous side-effects; rather, it would say, “There are minimal risks and maximum benefits associated with this procedure. Don’t hesitate to try it. You’ve got this.”