The chronically ill and those who care for them often live in an invisible world
Written by: Toni Bernhard
Most of us who live day in and day out with chronic illness—which includes chronic pain—don’t look different from the healthy people all around us. I remember seeing tennis great, Venus Williams, on television, watching from the stands as her sister played in the U.S. Open tennis final. Williams had recently been diagnosed with Sjögren’s Syndrome, an autoimmune disease. The announcers were talking about her illness as the camera moved in for a close-up. As I watched, I was certain that most viewers would be thinking, “But she doesn’t look sick.” I’ve met a women online who suffers from Sjögren’s Syndrome, so I knew that Williams was facing a hard—and a largely invisible—struggle.
What are some of the consequences of living in the invisible world of the chronically ill?
Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.
This expectation of health is especially hard on young people. Until I became chronically ill myself, I never realized how many young people struggle with their health. (I write about the extra difficulties they face in “The Extra Burdens Faced by Young People with Chronic Illness.”)
Having convinced ourselves that we’ve let them down, we may even feel guilty and embarrassed around our loved ones. I had to overcome the terrible guilt I felt over not being active in the lives of my two grandchildren. I had so many fantasies about what we’d be doing together. My oldest grandchild, Malia, lives in the city where I grew up—Los Angeles. I thought I’d be taking her to all my favorite places. My youngest grandchild, Cam, lives in Berkeley, only about an hour from where I live. I thought I’d be riding cable cars with her in San Francisco and going on Bay cruises that would take us right under the Golden Gate Bridge. Instead, I see her when my son’s family visits me in Davis.
When I finally realized that it was not my fault that I was sick, I was able to shed the guilty feeling that I was letting my granddaughters down. Once I did this, I was able to embrace my life as it is—sickness included. This freed me to look for ways to connect with Malia and Cam that didn’t include seeing them in person very often.
Frustration at the lack of understanding.
The “list of misunderstandings” is a long one. I wrote about some of them in “Six Common Misconceptions about the Chronically Ill.” Here are four more, particularly related to the invisibility of our medical conditions.
Illness-related pain and debilitating fatigue are not cured by engaging in strenuous exercise, although I’ve read many accounts of doctors who have prescribed this very treatment. This lack of understanding from the medical community can have serious, even fatal, consequences because we may become gun-shy about seeing a doctor when a new symptom appears—one that could be a sign of a life-threatening medical problem, unrelated to our current illness.
Second, we may be treated as malingerers by family members, friends, employers, the medical profession, even the general public. After I was interviewed on a local National Public Radio show, I received an email from a listener, telling me that he didn’t want his tax dollars going to support “an amotivational slacker.” Whoa. I was confused: Did he mean I was an “amotivational slacker” as opposed to a “motivational slacker”? I’m making light of his comment now, but at the time I read it, it stung—badly.
Third, people in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication.
Lastly, we face misunderstanding over what it means to be disabled. Just because we’re too sick to work and be active for extended periods doesn’t mean we can’t sometimes go out to a restaurant or have people over. This misunderstanding can have tragic consequences. I’ve read about people who’ve had their long-term disability payments revoked because an investigator who was sent to check up on them saw them being active in some way, perhaps going to the store.
I’ve learned that the burden is on those who are chronically ill to make the invisible visible to others. This entails educating people about chronic illness, although it’s good to remember that some people may never accept that we’re disabled by invisible pain or invisible illness. This inability on their part is about them, not us. They may not have had an experience with illness; it may scare them and remind them of their own mortality.
The kindest thing we can do for ourselves when people disappoint us is to accept that disappointments are an inevitable part of life and then cultivate compassion for ourselves over any suffering we’re experiencing as a result of their lack of understanding about what it’s like to live with invisible pain and with invisible illness.