My friends Ernie and Gail and I recently spoke with students in the local university’s health professions classes as part of a series to put them in touch with real patients and caregivers. In discussing the importance of connecting her students with patients, their professor noted that some of these young scholars had expressed surprise that the speakers looked and acted “normal,” were intelligent, and presented insightful and articulate views.
As someone who has lived with chronic pain for the past 30 years and who facilitated a chronic pain support group for 15 years, that attitude did not surprise me. And I was happy to do my part to break down all-too-prevalent stereotypes that follow those of us with conditions that can separate us from the rest of society. Like older Americans and those living in poverty, people with debilitating health conditions often find themselves on the receiving end of pity, condescension, and dismissive attitudes.
In a society that values wealth, health, and youth, those who are missing one or all of those attributes don’t seem to count for much. To make our journey even more difficult, some people blame us for our situation.
I have encountered what I call the “I’m OK, you’re not OK” syndrome more than once as I navigate life under less than ideal health conditions. One friend, upon learning that I had been diagnosed with rheumatoid arthritis, suggested that I had developed the autoimmune disorder because I didn’t exercise as much as she did. I realized her comment came from fear. She and I had much in common—age, race, profession, education—so if I could get RA out of the blue, it could strike her down as well. UNLESS she found something that set us apart and protected her. She exercised more, so she wouldn’t get it.
Fear also plays a role in separating people who are disabled or have a serious health condition from everyday interactions. If we are invisible, then others won’t have to figure out what to say to us, determine how to treat us, or acknowledge that they, too, will age and are vulnerable to sudden disease or accident. My friend Steve has muscular dystrophy. From his wheelchair, he dispenses his slant-6 perspectives on life, a wry and witty companion who enjoys going out to eat with his wife and friends. Too many times a waiter has asked his wife what Steve wants to eat, as if being in a wheelchair has robbed him of the power of speech.
So when I talk with students, I leave them with this thought: Your patient is a person—a brilliant conversationalist, a classic car restorer, an award-winning journalist, a fighter jet pilot, a computer wizard, or perhaps a keen observer of life. You never know what, or whom, you might be missing.