I Can’t Work Because of My Illness, but I’m Still Valuable
Juvenile Idiopathic Arthritis
We’re a community that supports each other by sharing our experiences.
Recently, I sent an email to a friend from graduate school to wish her a happy birthday. We’re not in touch with each other regularly, but I always think of her at the beginning of this month. She wrote back asking about me and my husband, and I gave her a quick update: my chronic fatigue is growing worse, but I’m trying a new medicine that may help. My husband is busy with teaching at a college, including an interdisciplinary course on the Renaissance. I asked how her work was going. She replied with what she’s teaching and writing and commented on how fascinating my husband’s class must be. Nothing about my situation.
Normally, I’d chalk this up to the brevity of our exchange, what was on her mind at the moment, or just being human. After all, I’m sure there have been hundreds of times that I’ve failed to comment on or ask about something another person deemed important. But this situation has happened again and again, now that my chronic illness prevents me from working. At dinner parties with my husband’s colleagues, someone meeting me for the first time will ask what I do, and I usually reply first by saying what I used to do, many years ago. Then I add that due to illness, I’m now unable to work. The person nearly always looks to someone else and changes the subject quickly. Sometimes there’s a murmur of pity for me first, sometimes not.
This doesn’t always happen. But when it does, and it does with some frequency, I’m left feeling rejected and wondering to myself, “Did my mention of illness ending my career depress you too much? Am I too uninteresting for you? Do I just seem less worthy of your attention? Or just, ‘less worthy?’”
I don’t get angry with the person who turned away from me, because I get it. Illness, especially the idea of illness taking away something valuable, is not a happy subject – and since most people realize it can happen to anyone, it’s something they’d rather not think about. Also, our society is one that values work so highly that what one does becomes one’s identity. After all, when we meet someone new, we often first ask, “What do you do?”
I don’t like admitting this, but I used to believe strongly that the work one did determined one’s worth. (And the harder one worked, the worthier one was.) I came from a family of academics, and success in one’s area of scholarship (determined both by how bright one was and by how productive one was) was what seemed to matter most. I’d had a serious chronic illness since age 8, but while it caused significant pain and disability (I used a wheelchair for most of my childhood), it didn’t affect my mind, and I worked very hard to succeed – going from high school to college to, finally, a rigorous doctoral program. And then the fatigue hit. Bone-crushing, mind-numbing, utterly debilitating fatigue. I couldn’t sit upright for a full three hour seminar, much less follow the discussion or speak coherently. Some of my professors began to question my intellect. And I realized that there was no way, if this continued, that I could finish my degree, much less go on to a college teaching career, which I’d dreamed of for years.
I started to question who I was, what my worth was, if I couldn’t even always get out of bed. But the chronic fatigue persisted, and I learned to redefine what makes a person valuable. Instead of trying to be “the best” at something, I now try to be the best person I can be, and the questions I ask myself are less often, “How well did I accomplish that?” and more often, “Was I kind to that person? Was I generous? Did I listen well?” When I have a bit of energy, I might write letters to friends, or call a member of congress about legislation that could help people who are chronically ill, or take part in a research study to help find better treatments for people who come after me. I’ve assisted in medical school courses that help clinicians-to-be see the “full picture” of living with illness. These things are unrelated to my original choice of “work,” but they feel worthwhile and valuable to me.
So when I or another person respond to your, “What do you do?” question by saying we’re on disability or unable to work, please don’t pity us, and please don’t assume we’re people to be casted off as uninteresting or less valuable. Ask us about what is meaningful in our lives, even about our illnesses. You might be surprised by our answers.
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Getty image by Tsiomashko_Denis