One of the experiences that caught me by surprise when I became chronically ill was the realization that I’d taken up residence in a parallel universe I hadn’t even known existed: the invisible world of the chronically ill. The reason it’s invisible is that most of us who live in it don’t appear on the surface to be any different from those around us. We simply don’t look or sound as if we’re sick or in pain.
Millions of people live day-to-day with medical problems that are invisible to others. This often includes conditions that are life-threatening, such as cancer and heart disease. 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 struggle. I also knew that it was an invisible struggle.
What are some of the consequences of having dual residence—in the world inhabited by the healthy and in the invisible world of the chronically ill?
Feelings of guilt and embarrassment. Because we’re repeatedly told that we look and sound fine, many of us begin to think it’s our fault that we’re sick or in pain. We must be doing something wrong. The culture around us reinforces this notion. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy. Yes, it’s okay to occasionally come down with an acute illness or be in pain due to an injury or a surgical procedure, but then we’re supposed to get better. Everyone expected it of me and I expected it of myself.
For many years, I felt guilty and embarrassed that I wasn’t living up to the cultural norm: guilty in the sense that I thought I was doing something wrong by failing in my obligation to others and to myself to get better; embarrassed in the sense that I was judging myself negatively for not living up to what I perceived to be others’ expectations of me. Both of these emotional reactions can add intense mental suffering to the physical suffering that the chronically ill are already living with every day.
This expectation of health is especially hard on young people because they face ongoing pressure to “hit the gym” and “stay in shape.” Until I became a member of the chronic illness community, I didn’t realize how many young people struggle with their health. I was in my 50s when I got sick, so if I felt guilty and embarrassed, imagine how hard it must be for young people. (I write about the extra difficulties they face in "The Extra Burdens Faced by Young People with Chronic Illness.")
These feelings of guilt and embarrassment may even extend to those we’re closest to. Many of us believe that we’ve let our family and friends down. In the early years of my illness, I used to sob to my husband, “I’ve ruined your life.” I count myself fortunate to have had his shoulder to cry on because many spouses and partners don’t stick around, leaving the chronically ill person on his or her own, sometimes to raise the couple’s children. Many chronically ill parents have written to me about the terrible guilt they feel over their inability to be the active parent they’d dreamed of. In addition, because they don’t look sick or in pain, they also feel embarrassed and misunderstood around other parents.
I understand what they’re going through, because 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. The Buddha’s teachings were tremendously helpful to me here. He offers a dose of realism about what it means to be born into a body. It’s part of the human experience for bodies to get sick and injured and old. Once I accepted this, I was able to embrace my life as it was—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. Recently, Malia and I have started texting each other, making me feel very hip indeed!
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. I was helped out by my friend, Jane, whose response when I shared his words with her was to point out how unhappy he must be to have said something so cruel to me. Her response—compassion for him—shook me right out of my funk.
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. Several people have told me that, unless their personal doctor is available to vouch for them, they won’t go to the emergency room, no matter how unbearable their pain becomes.
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. In one such instance, a woman lost her disability check after the investigator saw her doing light gardening in her front yard. That’s sobering: as limited as I am, I sometimes pull weeds; I can’t ask my husband to do everything.
These are some of the challenges faced by those of us whose medical conditions are invisible. It’s as if we’re inhabiting two worlds—the one we share with the healthy and the invisible parallel universe that we share with others who are sick. Juggling these two worlds is a lot of work. No wonder we sometimes feel that being chronically ill is a full-time job—a job we didn’t train for and one we are often ill-equipped to perform.
One reason I’m calling invisibility a burden is that the burden is on us to make the invisible visible to others—yet another part of our “workload.” 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. In addition, they may have never learned how to be compassionate toward others. The kindest thing we can do for ourselves when this happens is to accept that disappointments like this are an inevitable part of life and then wrap ourselves in a cloak of compassion over any suffering we’re experiencing as a result of their lack of understanding.
In those moments when I accept that some of the people I know may never understand what life with chronic pain and illness is like for me, I’m able to let go of the agonizing longing and the fruitless desire for them to behave as I want them to. When I do this, I feel a heavy burden lift, as if I’m finally giving up a fight I cannot win. This gives rise to a sublime and gentle sense of peace with my life as it is, whether others understand that life or not.
My heartfelt wish is that you find a measure of peace in your life.
You might also find this helpful: "A Not-To-Do List for the Chronically Ill."
© 2011 Toni Bernhard www.tonibernhard.com
Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.
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