Diseases That Get No Respect

Dr. Brian Goldman, Friday May 27, 2011:

When it comes to patients, people like me are trained to respect them all. As for the diseases patients carry, that's a very different story. This week on White Coat, Black Art: diseases that get little respect inside the hospital's sliding doors. I speak with a Vancouver woman whose medical condition has generated everything from skepticism to outright disbelief from many of the doctors who've treated her. And, a medical historian explains why some diseases get a lot of respect while others don't, and whether marketing can change that.

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In medical circles, there are diseases that command respect among physicians. Multiple sclerosis, rheumatoid arthritis and strokes are three such examples. These and many others have two things in common. First, they are serious conditions in that they are either life threatening or cause serious disability. Second, they can be confirmed objectively through blood work, CT scans, MRIs, and other forms of testing.

Cancer may well top the list. Even so, some forms of cancer get more respect than others. As reported by CBC News, in terms of fundraising and research dollars, we tend to respect breast, prostate, childhood cancers and leukemias far more than lung, colorectal and stomach cancers. That's surprising since it's the latter three types of cancer that are among the most common and most deadly.

Then again, there's a category of medical conditions you'd swear people like me are trained or acculturated to disrespect if not view with outright contempt - no matter how much that makes you suffer.

Comedian Rodney Dangerfield made a successful stand-up career out of getting no respect. It's fair to say the Rodney Dangerfield of diseases is one called Fibromyalgia (FM). It's a condition that causes pain, stiffness, fatigue, poor sleep, plus trouble thinking and concentrating. According to a recent review article, roughly five percent of the population has FM, with the highest prevalence occurring in middle-aged women.

Researchers are zeroing in on the cause of FM. It is now seen as a biological neurosensory disorder characterized in part by abnormal processing of pain signals in the central nervous system. Along with a new understanding of the biological basis of FM have come new drug treatments to relieve the symptoms. Not only that, in 1990, the American College of Rheumatology published guidelines on how to make the diagnosis.

Still, it's hard to find a disease with less respect among people like me. None of this is news to Susan MacLean, a patient with FM and President of Myalgic Encephalomyelitis and Fibromyalgia Society of BC (MEFM) who began by battling the disease and ended up battling many of the doctors who treated her.

"I've had a number of very negative reactions from doctors," MacLean told WCBA. "I'd like to describe my experience when I actually received the diagnosis of FM.

"I was seeing a doctor for a number of months before a referral to a specialist was actually made. The reaction of the rheumatologist was that this was an illness of high-strung, uptight middle age women, that I should buy new shoes to alleviate the excruciating pain in my feet and legs.

"They did a very cursory physical examination, handed me a brochure, told me not to seek out any support for the illness from any of the local support groups in town, because that was simply a bunch of people sitting around, holding hands feeling sorry for themselves.

"I was patted on the back, escorted out of the office, and was told that they hoped they never saw me again," recalls MacLean.

Other modern day illnesses that have been disrespected by physicians include chronic fatigue syndrome and - at least until recently - concussion. Read more>>