Why we need truth in labeling of medical conditions

Labels matter. We quickly form judgments based on them. If we hear someone called lazy, the label “lazy person” attaches in our mind even though we may not have even met the person. The same is true for labels given to various medical conditions. If the label for an illness uses language such as “fatigue,” we abstract from our experience and think we know what it’s like to suffer from it.

Some medical disorders have been named after the researcher who discovered or described them in the medical literature (Alzheimer’s). Others are named after a famous patient (Lou Gerig’s disease). The result: instant legitimacy.

The trend, however, is to name illnesses and pain conditions by describing their primary signs or symptoms. There may be sound reasons for this trend, but it can lead to inaccurate labeling of people and to unnecessary suffering by those who’ve been diagnosed with the disorder or disease.

For example, people with rheumatoid arthritis are frequently put into the same category as those with osteoarthritis—a common condition usually associated with aging in which the joints become painful and stiff. But rheumatoid arthritis is a systemic autoimmune disease. Joint pain and stiffness is just one of its many symptoms. The suffering of those with RA is often trivialized because they’re lumped together with those who have arthritis. People with RA are told it’s no big deal, and often have to put up with insensitive comments, such as “You’re too young to have aching joints.”

A second example. People with fibromyalgia (fibro: tissue containing fibers; myalgia: muscle pain) do indeed have muscle pain in their tissues. But anyone can have muscle pain if he or she moves wrong or overdoes it during a work-out. The muscle pain of fibromyalgia can be so debilitating that some people can’t move without excruciating pain. In addition, muscle pain isn’t the only symptom of fibromyalgia; yet, there you have it: fibro (tissues containing fibers) myalgia (muscle pain).

A third example. People with chronic fatigue syndrome do experience fatigue. But when those with this diagnosis hear others say, “I’m tired too,” they know that they’ve been labeled in a most inaccurate way and that the seriousness of their illness has been disregarded. They also know that the painful label “malingerer” may not be far behind.

Lastly, here’s the most absurd name for a disorder I’ve yet to encounter (readers may be able to top me on this—please leave a comment if you can!): Restless Leg Syndrome. I’ve suffered from this neurological disorder for over 20 years. Let’s see how accurately the label describes the condition.

Restless

When I get an attack of RLS, my legs aren’t restless. They are seized by waves of gnawing unpleasant sensations that are so unbearable, I’m forced to move my legs to try and get relief. After each wave, the sensations subside, only to return within another minute or two. This can go on for hours. When an attack comes at night (which is when RLS most often occurs), it is impossible to sleep. The result can be a sleepless night and one very long and unpleasant day ahead.

Leg

Sometimes I get these waves of gnawing sensations in my hands. Others get it in their arms. There’s nothing exclusively “leg” about restless leg syndrome.

Syndrome

I object to this label in general because it trivializes what can be debilitating suffering. RLS is a neurological disorder. It’s not a syndrome. Neither is so-called chronic fatigue syndrome.

This is the first time I’ve shared with anyone but my husband and my doctor that I suffer from restless leg syndrome. I’ve never even told my two kids. Why? Because the name is downright embarrassing. The FDA has approved two prescription medications for it—Requip and Mirapex. These are Parkinson’s drugs which, when taken in low doses, help prevent an attack of RLS.

You’d think that Federal Drug Administration approval of two medications for a disorder would make it legitimate. Not so. The labels “restless” and “leg” are just too silly. Last year, I heard a late night comedian make cruel fun of it, saying, “And now there’s a drug for restless leg syndrome. Come off it. Your legs are restless? Get a life.” Ironically, I only heard his comment because I was awake due to, yup, RLS.

So, I’ve come out of the closet: I have restless leg syndrome. On nights when the Mirapex doesn’t work, you’ll find me pacing the floors, willing to try just about anything to keep the unbearable sensations from continuing. No matter how cold a night it is, I put ice on my feet and calves; or I wrap my legs so tightly in ace bandages that I have to be careful not to cut off the blood circulation. Sometimes these home remedies help, but usually they don’t because they’re only effective if I catch an attack right when it starts, and RLS only wakes me up once it’s “up and running” so to speak. And that means I’m looking at another night of broken sleep.

Who comes up with these names?

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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