An excellent definition of invisible illness comes from Social Work Today online, the November-December 2007 issue:
“The term invisible illness refers to any medical condition that is not outwardly visible to others, even health care professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.”
Someone who suffers from an invisible illness faces the additional challenge of social perceptions. No one is going to give you a hard time about bowing out of social situations, missing work, or not being your cheerful self when you explain that you have a brain tumor or bone cancer. However, if you were to say you had chronic fatigue syndrome, fibromyalgia, lupus, rheumatoid arthritis, or chronic pain it is unlikely that you will be met with the same compassion and understanding. In fact, many invisible illness sufferers meet just the opposite.
Those suffering from an invisible illness spend so much time explaining what’s wrong it is practically another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions, but you also face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you. These diseases don’t receive the same lip service as diseases like cancer. Accordingly social awareness is desperately lacking.
One of the biggest challenges of an invisible illness is that many of these diseases such as chronic pain, rheumatoid arthritis, lupus, and chronic fatigue syndrome tend to “flare.” One day the symptoms are manageable and they appear normal, going through life just like everyone else and the next day the symptoms are out of control and the sufferer is unable to do much of anything and completely miserable to boot. It is this vacillation that makes outside observers so incredulous of the truth and seriousness of the persons disease and suffering. People believe that if you can get up and do it one day you should be able to do it every day.
On the surface this seems like a pretty reasonable assumption. Unfortunately, that is exactly what it is—an assumption. It is not possible to look at someone and accurately know how they feel. Pain is not always visible. Someone may be smiling while wishing they could collapse and roll around on the floor screaming. I know, I have had that fantasy. Sadly, putting on a brave face and soldiering through is what gets us through the day, more accurately, life. Still the downside to this is that people so often assume from this act that you are normal and healthy, so when you do lose the battle with your own body and symptoms show or you have to speak up it is met with a measure of disbelief.
I have fought like crazy to keep my job. Everything in my life revolved around making it to and through work five days a week eight hours a day. I would rest and try to sleep as much as I could every day after work. I had no social life because expending that extra energy lessened the chances that I would be able to go to work in the morning. Even on weekends I made sure that one of those days was nothing but relaxing and recuperating from the work week so that I could do it again the following week.
I was more stressed about making it to work and surviving the day than I was about the work itself. So anxious, in fact, that it took over all other parts of my life. It was a constant worry so severe that the anxiety started making me worse. All of my symptoms just kept getting worse and as a result I started missing even more work. If that wasn’t enough, even as I missed days of work I couldn’t relax and get better. I was too busy stressing about missing work.
I never wanted to be seen as a complainer, so when I was in the office I worked very hard to appear healthy. This created a catch 22 where I didn’t want to be seen as a complainer, but I also wanted people to understand how very sick I was. I cornered myself to such a degree that I began to hope that I would have a major seizure in the office so no one would question the severity of my situation. Even though I know that I would be horribly embarrassed I figured with a seizure I wouldn’t be conscious to face everyone at the time and afterwards I would feel so miserable I wouldn’t care. I had it planned out perfectly, right up until that ambulance ride and then it all sort of fell apart. Details–sheesh.
At the time I knew that this was a completely insane line of thought, but it is an excellent illustration of how much someone with an invisible illness struggles with the perception of those around them. The inconsiderate comments, actions, and choices of people around us can be so devastating and demoralizing they make dealing with other people more of a challenge than the disease itself.
Chances are that you know somebody with an invisible illness as about ten percent of Americans have a medical condition which could be considered an invisible illness. Ninety six percent of people with chronic medical conditions live with a condition that is invisible. These people do not use any device like a cane or walker and act as if they don’t have a medical condition. Many sufferers are incredible actors who can smile through pain and misery that would have most people heading to the ER, but if you look closely you will probably see the tightness in their eyes, the tension in their shoulders and the clench of their jaws. The internal battle is ongoing. Sometimes we win and can move through life with the flow of society, others we lose and have to pull out of the current and take care of ourselves. When those moments arrive remember that although you can’t see the disease the suffering is very real. You may not completely understand the experience, but you can take them at their word. Health is like air; it’s not important until you don’t have any.
“Chronic Conditions: Making the Case for Ongoing Care”. Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update).