Living with Chronic Illness: Being Honest About Your Feelings

By Joy H. Selak

One of the many daily challenges of living with chronic illness is how to answer the simple question, “How are you?” The polite answer is, “Fine, thanks.” Much of the time I am not fine, but I was taught by my parents I should not complain or, even worse, whine. Illness has taught me that telling the truth about how I am feeling is important to being an authentic person, even if it is not a happy statement. I have also learned that if this news is not laden with emotion, fear, or self-pity, most people react with kindness.

One warm and sunny spring day I attended a committee meeting of an organization that I serve. We decided to meet outdoors and had spread a blanket under a tree; one member even brought lemonade. It should have been a lovely gathering, but I was in the midst of a hellish, painful flare that had been going on for weeks and had dragged myself to the meeting only because I was the committee chair. I found myself unable to follow, much less lead, the discussion. I was distracted by pain, muted by medication, and groggy with fatigue. Sitting on the hard ground was making it worse. Finally I said, “I think most of you know I have a chronic illness, and I’m having a really bad day, so please be patient with me. I’m doing the best I can.”

The supportive response was immediate; one person volunteered to take over some of my tasks and another began to take meeting notes. Afterward, a former physician who was on the committee told me he would like to talk further with me about invisible illness; not because he was a doctor, but because he also had a chronic illness. Knowing this allowed us to forge a more meaningful friendship.

Later, I took a two-week symposium on writing narrative nonfiction. I was uncomfortable revealing to the group on the very first day that I had a chronic illness and was writing about it. I just don’t like to define myself as a sick person, especially to strangers, and I thought I would be diminished in their eyes. Instead, at the end of the first meeting my classmates swarmed around me with questions about my condition. One woman, crippled by childhood polio, approached me with her walker and said, “Oh, I just love medical stories!”

As time has passed, and after many experiences like these, the discomfort I used to feel in talking about my illness has faded. Now that I’ve made peace with my illness, it is not laden with all the emotion I felt in the early “Getting Sick” years. I’m not as defensive about being believed, either. Now, telling someone I have a chronic illness carries no more emotional weight for me than telling someone I wear glasses. It’s just part of who I am.

The question I must answer these days is “What does this person need to know?” For example, if I am taking on a new volunteer responsibility, I need to share the reality of my limitations with those who will depend on me. If I make a new friend, at some point I want to share with this person why I don’t take phone calls during my afternoon rest, or why I may be less available than other friends because my illness demands that I spend a lot of time alone and quiet. In other situations, like a casual friendship or a brief exchange at a party, my illness is not relevant. If I sense I am speaking with a person who is judgmental or insensitive, it is not in my interest to fuel their negativity. This process of getting comfortable with telling, and with not telling, has been freeing.

This article, which originally appeared on DemosHealth.com, is adapted from You Don’t Look Sick!