“You looking good,” said Sethe.
“Devil’s confusion. He lets me look good long as I feel bad,” said Paul D.
–in Beloved, by Toni Morrison
At times, one of the most difficult things about living with a poorly understood illness like CFS or fibromyalgia (FM) is figuring out how to be sick in a healthy world. In her book You Are Not Your Illness, Linda Noble Topf explains how illness has a way of exaggerating our sense of “being different from others, of being special or unworthy, and of ultimately being separate and alone.” Nevertheless, the experience of feeling connected to others is vital to both our physical and mental well-being.
The sense of isolation people with CFS/FM may feel is exacerbated by the fact that our illness is invisible. As CFS/FM sufferers, most of us have probably heard the phrase, “But you don’t look sick!” more times than we can count. Even when intended as a compliment, this simple statement can touch off a cascade of emotions: anger, confusion, shame, and self-doubt. It seems that no matter how long we’ve lived with CFS/FM, innocent comments like this from friends and strangers alike have the potential to touch a wound that at times feels surprisingly raw.
Often the question people with CFS/FM most dread hearing from a friend or acquaintance is “How are you?” This seemingly innocuous ritual of polite conversation can be fraught with complexity and emotion for CFS/FM sufferers. We may long for the days when we could reply, “Fine thanks,” without a second thought; but when overwhelming pain, fatigue, or other symptoms render us vulnerable and disheartened, this simple response may feel like a lie.
Ailing Bodies, Wounded Hearts
In Sick And Tired Of Feeling Sick And Tired, Donoghue and Siegel point out, “where need is most pronounced, feelings are most intense.” Human beings are social creatures. Our sense of who we are and our place in the world are constantly being influenced and redefined by the nature and quality of our relationships with others. Especially at a time when chronic illness presents myriad threats to our identity and sense of self-worth, it is natural to look to others for support and validation. Never are our relationships with our friends more essential—and more challenged—than when our lives have been transformed by illness.
However, coping with a poorly understood chronic illness can leave us feeling lonely, vulnerable, and over-sensitive. Any CFS/FM sufferer knows how difficult it can be to adjust to our own unpredictable symptoms and limitations that wax and wane over time. These symptoms may allow us to engage in an activity one day that may be impossible to contemplate the next. Just as we struggle with an illness that is so tricky to understand, others find it even harder to comprehend because they haven’t experienced it. This problem is compounded by the fact that CFS/FM sufferers usually look healthy. “Since chronic pain and ongoing exhaustion seldom manifests outwardly, people sometimes have a difficult time believing that a person with a healthy appearance and lively demeanor can have so many profound symptoms and limitations,” writes Carol Sveilich, author of the book, Just Fine: Unmasking Concealed Chronic Illness and Pain.
Assumptions are often based on physical appearance. Says Sveilich, “It’s very stressful to try to convince the world that your pain or symptoms are real.” With an invisible illness or disability, the burden typically falls upon the sufferer to explain and educate others. At first many people may respond with concern and compassion. Others may react with skepticism or ask scrutinizing questions. As time passes, even those who were originally sympathetic may question the existence of an illness that is invisible and incurable, or they may simply feel too uncomfortable to acknowledge it. Katrina Berne, CFS sufferer and author of Running on Empty: The Complete Guide to Chronic Fatigue Syndrome, says, “Our society encourages denial of all things unpleasant, especially those we fear or cannot readily understand.”
Without visible signs of pain and illness, we’re often left feeling the need to explain or even over-emphasize symptoms around others. We might find ourselves trying to justify our activity restrictions or insisting on the severity of our symptoms—after which we may feel guilt or anxiety about being seen as “complainers.” Desperately wishing we weren’t sick, yet wanting clear signs of illness to validate our experience, we’re left with a sense of confusion and self-doubt. It can be difficult to know how to act because we’re caught between contradictory wishes: wanting to appear normal and wanting to be understood. Chronic fatigue syndrome and fibromyalgia can often feel like the elephant in the room.
While some relationships will be deepened by the trials of chronic illness, we may have to be willing to let some friends go. In A Delicate Balance: Living Successfully with Chronic Illness, Susan Milstrey Wells writes, “We may lose friends because…we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be. Sometimes our friends just don’t know how to act around us when we are ill.” Still, there will be true friends to whom we can pour out our hearts, and these are friendships to be treasured.
Photo by Katarina Westerlund