Living with An Invisible Illness

By Judy Kirkwood

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.

Getting ready in the morning, for instance, equals almost six spoons because it takes a spoon to get out of bed when you are in pain, a spoon to eat even though you feel sick, a spoon to take your medicine, to shower, and so forth – all things a well person does automatically. You don’t know if you will be feeling off-balance when you stand up; you’re not sure your hands will work well enough to button your blouse. Just leaning over the sink and brushing your teeth may take a great deal of energy when your joints are inflamed.

Miserandino went on to point out the day had barely begun and she had used half her spoons. Every little thing that well people take for granted during a day has to be carefully considered from the point of view of “what will it cost” to perform all the actions that make up a task like cooking.

When the spoons are gone, the day is basically over, with no more energy for anything other than resting. Miserandino’s spoon theory, popularized on her support site, butyoudontlooksick.com, and in numerous media interviews, spawned a group known as “spoonies,” who offer support to each other via twitter at #spoonies.

The power of is the Internet are important tools in living with chronic invisible illnesses. One of the things these seemingly well-functioning patients need is validation that they are ill, even if they look like they are ok. Social media provides excellent avenues for connecting with others in the same boat.

So the next time you see someone you perceive to be healthy park in a handicapped spot and go into a store, consider what it might be like to walk in their shoes. Perhaps they are going to use a scooter inside the store. Maybe they will need to sit down on a bench to rest before walking the short distance back to their car. They may need help putting things in their car as opening and closing the car door, or raising a trunk lid may cause physical strain.

And the next time you pick up a spoon, think what you would do if you had only a dozen spoons that represented the different tasks you could do in one day.

Judy Kirkwood provides content for Facebook entries (with a specialty in positive affirmations); writes articles for print and web publications – national, regional, and local; is a contributing writer to Simply the Best magazine in South Florida; and plays on the beach and in the pool year-round. Please visit www.judykirkwood.wix.com/judy-kirkwood.

Judy Kirkwood is ThirdAge.com’s Contributing Writer and Forum Director.