Living with An Invisible Illness

Symptoms of an invisible illness — like fibromyalgia or Chronic Fatigue Syndrome (CFS) — are often under wraps, literally. Other people don’t know that beneath your clothes your joints are hurting, or that even though you may be able to go shopping one day, that doesn’t mean you can do it the next day. Just because you have a smile on your face doesn’t mean you aren’t hurting; it may mean you have gotten used to wearing a mask. But often all outsiders see is someone who looks as if they should be able to function normally.

And those aren’t the only burdens faced by people who suffer from fibromyalgia or CFS. The two conditions have been dogged by controversy for decades because of the difficulty of diagnosis and the skeptical attitude of both the medical profession and people who have never suffered from the condition.

As its name indicates, CFS is characterized by extreme, persistent fatigue that can’t be traced to any physical or mental activity. Sleeping doesn’t seem to help, and sufferers can also have pain that moves from one area of the body to another, as well as difficulty in concentrating. “There is so much I want to do,” a patient wrote in an internet support group, “but I just sit and watch the days pass by.”

People suffering from fibromyalgia, another invisible illness, also experience debilitating physical and mental symptoms,including fatigue, depression, as well as pain in areas including the hips and the neck. And like CFS patients, they often don’t get enough emotional support from friends and family who think they’re being “whiners.” As one irritated fibromyalgia patient wrote, “Just because you can’t see it doesn’t mean it’s not there.”

Even people who have lupus, an autoimmune disease that has none of the controversy that’s surrounded CFS and fibromyalgia, can find themselves misunderstood by family and friends who think that the patient may be “making too much” of their condition.

That attitude may be changing to some degree, though, thanks to lupus patient advocate Christine Miserandino. When a friend asked her to say what it really felt like to have lupus, Miserandino came up with “The Spoon Theory” – an explanatory concept that can work as well for those suffering from Chronic Fatigue Syndrome and fibromyalgia.

Miserandino explained what it feels like to be sick all the time by giving her friend 12 spoons. She then took a spoon away for each issue she deals with every day that well people don’t have to think about.