Living With Serious Illness Offers Big Lessons on Resilience
@HealtheVoices online advocates share stories of moving beyond medical trauma.
Posted May 04, 2018
What does a white 59-year-old gay man living with HIV, a 30-something breast cancer survivor, a young woman with epilepsy, another with Crohn’s disease, Addison’s disease, and rheumatoid arthritis, and still another, with lupus, have in common?
If you guessed that they are all living with a serious medical condition, you were right—but only half right.
You see, each of these people—let’s call them “we” and “us,” as I myself am the gay man living with HIV I reference here—has had the experience of receiving a medical diagnosis that forever changed our lives.
Each of us has experienced one or more traumatic medical condition. Each has struggled to find ourselves amidst the medical terms and treatments that could bury us if we let them. All of us chose to be resilient rather than to fold, and to frame the stories of our experiences as tales of courage and survival rather than fear and victimization.
The people I describe here, including myself, are health advocates who share stories from our own lives to inspire and motivate others facing chronic and life-challenging illness to find healing within themselves, even when there is no cure for what ails them.
We—Jen Campisano (breast cancer and sarcoidosis advocate), Kate Sondergeid (epilepsy advocate), Kenzie Libbesmeier (rheumatoid arthritis, Crohn’s, and Addison’s advocate), Hetlena Johnson (lupus advocate), and I—shared the stage in a panel discussion titled “The Power of Resilience: Strategies for thriving in the Challenging Situations We Face” during the fourth annual HealtheVoices conference, held at the Swissotel in Chicago, April 28-30.
The conference, sponsored by Janssen Pharmaceuticals, brought together health advocates representing more than 40 different conditions. Unlike most health-related conferences that typically focus on one particular condition, HealtheVoices’ basic, brilliant purpose is to bring together advocates with online followings to share experience, strength, and hope—as well as practical and technical information—and to support one another in serving our communities with valuable information and inspiring stories.
“The people in this room are my people,” said Kenzie Libbesmeier. “The people in this room are the people who love me as the mess that I am.” Referring to her own serious medical trauma that brought her close to death, she said her fellow advocates also understand the impact of these experiences and the resilience it takes to bounce back from them.
Libbesmeier marveled at her own resilience in a story about a dream in which she was offered the chance to leave her troubled, intubated body. “The thing I keep coming back to,” she said, “is the bottom line, that for some reason I chose to stay. Even when I was in a place where I was so close to death, where my doctors told my family ‘she may not come out of it.’” She added, “I’m going to keep choosing to stay.”
Asked to share an example of a time I had to re-frame the story of a negative experience in a positive way, I described my own unusual experience of being diagnosed with HIV in 2005.
Sadly, there is nothing unusual about a sexually active gay man in Washington, D.C. being diagnosed with HIV. But in my case, I had been reporting on HIV-AIDS for 20 years at that point—as an HIV-negative gay man. Even as many of my friends died from AIDS, and the epidemic ravaged the gay community—and as I reported others’ stories—I had been only an observer, no matter how close it hit to home.
Now I was the one living with HIV. The story I told myself about what it “means” would determine to a great extent whether I lived well with HIV—or let myself be victimized by my diagnosis.
“Based on my years of reporting on this,” I said on the HealtheVoices panel, “chronicling the history, it became clear the models I would take for my story were heroic figures: gay men who in the early years of AIDS insisted that the language and words we use to describe AIDS back then really mattered.” I noted that from the earliest years of the epidemic, using the term “AIDS victim” was disempowering.
“The difference between being and having is really at the core of the story,” I said. “I am not HIV and HIV is not me. I am John. I have this condition, but it doesn’t define me.”
This resonated with Jen Campisano. “When I had cancer,” she said, “I was very careful about the language I used around it. I didn’t like to talk about ‘my’ cancer, or own it.”
Besides the words and language we use to tell our own stories, my fellow advocates and I offered a few practical pointers that can help more people than just those living with chronic illness.
Hetlena Johnson spoke for everyone when she said, “You have to laugh and find the positive in everything you do.” A spouse or caring partner can certainly be helpful. Kate Sondergeid said that having someone you love, who doesn't judge you, is a great support. So is a text network. “This is such a crazy illness,” said Johnson of lupus, “that there’s always someone up in the middle of the night. So you can send a text to your network just to have someone chime in.”
I echoed Johnson’s comment about limiting the time we spend focusing on the things that can give us a bad day. “I know so many people who have bad days that are self-fulfilling prophecies,” I said. “Someone cuts them off at the light and they just hold onto it.”
Instead of holding onto the resentment, my experience says to let it go. Put it into perspective and don’t let it consume you. Practice resilience. Choose to be resilient—like everyone I met and heard at HealtheVoices. “You have to be like one of those clowns that you punch and it bounces back up,” I said. “That is resilience.”