ten. Special Considerations for Common Chronic Illnesses

Dennis D.'s comment:

I get so tired of people telling me that I don't look sick! What does sick look like anyway? I do my best to be presentable, just like anyone else. I take a shower, comb my hair, and wear clean clothes. Just because my disease doesn't show on the outside doesn't mean it's not doing bad things on the inside. And just because I don't look sick, doesn't mean I don't feel sick. I used to work in our family business. I was a real go-getter, putting in long days. After I got sick, I was lucky to put in 3 hours a day. My brother, who happens to be very smart and well-educated, got mad because I wasn't pulling my weight anymore. He told me I didn't look sick. And I told him that he didn't look stupid either!

The absence of visible and measurable symptoms results in patients being sick for years before they are taken seriously enough to get a diagnosis.

What is invisible chronic illness?

Invisible chronic illnesses (ICI) present a special set of challenges. If you have an ICI not only do you have to live with the illness, but also with the fact that your illness is invisible. You don't look sick! Other people cannot see symptoms like pain, confusion, fatigue, or subtle changes in memory and cognition. These symptoms are difficult for medical professionals to measure if the symptoms can be measured at all. People, including doctors, doubt that the patient is truly sick. They may attribute the problems to stress, overwork, or depression. In short, invisible can easily be dismissed as "being all in your head." Indeed, people with ICI doubt themselves, especially if their illness, like many chronic illnesses, has periods of activity and relative calm.

The absence of visible and measurable symptoms results in patients being sick for years before they are taken seriously enough to get a diagnosis. ICI is very difficult to diagnose. Clinicians are forced to rely on subjective descriptions of the symptoms provided by the patient. And the truth is that some of these symptoms occur as part of mental illness. A doctor may make an attempt, but without any measurable clinical evidence, no diagnosis is made. In the meantime, the disease continues to progress, often causing permanent damage.

In Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness, Donoghue and Siegel list some of the more baffling and prevalent invisible chronic illnesses: arthritis, which includes some 100 conditions, Charcot-Marie-Tooth disease (neuropathy[1] and muscular dystrophy), chronic fatigue immune dysfunction syndrome, endometriosis, fibromyalgia, human immunodeficiency virus (HIV), inflammatory bowel disease, irritable bowel syndrome, systemic lupus erythematosus, Lyme disease, migraine, multiple sclerosis, post-polio syndrome, premenstrual syndrome, and thyroid illnesses. Many of the autoimmune diseases can also be included in this list.

Perhaps one of the most difficult challenges of ICI is doubt and suspicion. Doctors doubt the validity of your symptoms. Family, friends, and co-workers cannot see any tangible evidence of the illness and suspect the patient of faking sickness to get out of work, to get out of commitments, or because the patient is simply a hypochondriac. In the face of all this doubt and suspicion, the patient likewise begins to doubt the reality of the illness, especially in illnesses that have a remitting/flaring nature. The doubt coming at you from both outside of you and within you leads to increased stress and insecurity, making whatever you have even worse.

  • [1] Nerve pain.
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