I knew something wasn’t right around midnight. Within hours, I was sprawled across the bathroom floor, weak and whimpering. Was this food poisoning? The flu? Maybe I should just try to sleep on a towel in the bathroom, I thought. There was vomit in my hair and on my nightgown, but I didn’t care. Illness had stripped me of all of my dignity.
[See: 10 Cold and Flu Myths Debunked.]
Fortunately, this scene from late February lasted only a few days. Soon enough, the worst of it — most likely, a self-diagnosed case of the norovirus — passed, and I returned to caring about basic hygiene and self-care. Showering, applying makeup and wearing something other than pajamas became obligatory again — much to the appreciation of my kids and boyfriend.
However, while I was spending many long hours quarantined to my bed that prior week, I couldn’t help but wonder why I usually do spend so much time and energy trying to look better than I often feel.
The answer took me back nearly a decade, when I was diagnosed with a chronic pain condition. For several years, I grappled with constant pain. I also had two babies (born 20 months apart, both preemies, both about as high-maintenance as babies come), a full-time job and no family nearby. I felt like I had no choice but to get up each day and pretend to be a “normal person.” Looking the part felt like all I had going for me.
A million doctor visits and an extensive medical regimen later, my pain is now under control (at least half the time), and it doesn’t require as much emotional energy to get through most days.
Not everyone is so lucky.
According to the Centers for Disease Control and Prevention, about half of all adults have at least one chronic health condition. Some other research suggests that 44 percent of the population experiences some form of chronic pain. These people are not experiencing their condition in isolation; it can easily pervade every aspect of their lives. They’re more likely to experience depression, anxiety and general body dissatisfaction, some research suggests. Our diagnoses may be different, but our challenges are similar.
[See: Your Guide to Over-the-Counter Pain Relief.]
The experience of pain is like “finding yourself in a different realm — a state of being unlike any other,” writes Melanie Thernstrom in her eloquently crafted book, The Pain Chronicles. “Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible,” she continues in the book. “But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?”
The farther away “normal” feels, then, the more pressing it may become to at least look the part. That sentiment — that there’s a strong connection between how we look and how we feel, even when how we feel is completely compromised by chronic illness — is common among the women I’ve interviewed who suffer from chronic illness or chronic pain.
Rebecca, for example, has “pretty much given up,” she told me. “But, if I were to lose some weight and if I were to think my hair looked decent,” she added, “I might feel better.”
Then there’s Samantha, who recounted the day she received a devastating diagnosis. “Don’t worry about this,” her doctor suggested as she sat in his office with tears of sadness, anger and frustration sliding down her face. “You’re a pretty girl.” Katie, meanwhile, told me that people often offer her encouragement by enthusiastically reassuring her that she “looks great!” “Of course,” she says, “this is part of the problem. How can people take an illness seriously if they can’t see it?”
As Barbara put it, “Looking healthy does not mean I am healthy.”
For Thernstron, searching for a wedding dress meant seeking styles that would conceal her areas of pain. (Her offending body parts were, after all, not invited to the day of celebration.) In my own way, I’ve tried to adapt by dressing to conceal my actual experiences of pain. So, if you see me in a dress at the park with my kids, I’m not trying to be fancy. I just need to wear something loose and comfortable. And I share Rebecca’s sentiment: “I always feel better when I think I look good,” she explains. “Or is it that I think I look good when I don’t feel sick?”
[See: 10 Lessons From Empowered Patients.]
So, what can you do if you know someone coping with a chronic illness? First, recognize that just because he or she looks or “seems” well doesn’t mean it’s true. Remember that these are moms, professionals, students, friends and relatives who can look like completely healthy people. Don’t be afraid to say, “You look great, but how are you feeling?” And, even better, feel free to ask if there’s anything you can do to help. Sometimes, for me, just hearing my pain acknowledged by an offer to help is enough to make me feel a whole lot better — even if I already look the part.
More from U.S. News
Your Guide to Over-the-Counter Pain Relief
11 Ways to Cope With Back Pain
The Most Common Patient Complaints
When Your Pain Is Disguised originally appeared on usnews.com
