Why Some Sufferers Don’t Get Better–The Psychosocial Barriers–Part II Social Stigma

Yesterday, I was speaking to a physician, and when I told him I have a headache clinic he immediately assumed that I was either a psychologist or someone who pushes narcotics.  This happens all the time.  If you are a sufferer of severe and/or chronic headache and you have ever, gone into the ER with a bad headache, missed a day of work due to a bad headache, or just discussed it with friends, you are too familiar with this social stigma.  It alone accounts for more misery than about any other single factor.

The Reasons for the Social Stigma. 

The fact that headaches are invisible (until recently) and primarily a disorder of women, starting hundreds of years ago they were assumed to be a sign of weakness at best . . . or simply fake.  That stigma continues until the present time.  I recently had a conversation with a group of ER providers and in general, they said there was no place in the ER for a headache sufferer.  The reason cited was that the ER should be reserved for true emergencies.  They agreed that the pain of a dislocated shoulder would be a good reason for going, or even a kidney stone. However, if the same or greater pain was in the head, then it would be a bad reason for a visit.

I heard the owner/director of a large Seattle pain clinic tell me that headaches are not “real pain.”  Really?  Many of my patients who have headaches have had other pain, such as low back pain, and they attest that their headaches are their worst pain.

Another reason for the stigma is the fact that headaches are so common. Almost 90% of Americans have said that they have had at least one headache that they can remember.  But, headache is a spectrum and most people are fortunately on the low end of that spectrum.  This makes it very unfair to make assumptions about people on the high end.

Imagine a factious world where all dark spots on the skin were called “freckles.” The kind of freckle that doesn’t interfere with life are very common.  Then someone with has a dark spot on their arm that is actually melanoma but the word “melanoma” didn’t exist. In this fictional world, this melanoma would also be called a “freckle.”  So the person with melanoma will call their boss and say, “I can’t come to work today because I have a freckle.”  The boss will smirk and say, “Okay . . . have fun at the mall because that is a lame excuse.”  They would not understand that the person was going into the hospital for major surgery and then chemotherapy, which would have a profound impact on their life.  This is what it is like having severe disabling migraines in a world of freckle headaches. We need new and better labels for headaches. Even migraine, meaning half-sided headache in Latin, is not enough. The difference between our patients and the general public that gets a mild headache now and then is huge.

The Consequences of Social Stigma

On the first line of social stigma, the impact is obvious.  People won’t believe or respect you if you miss functions due to the pain. They will assume that you are mentally ill or can’t handle stress, etc.  That alone is enough. But that is only the tip of the iceberg.

Next, there is a pitifully low investment in research. Over 1 billion dollars are spent on curing baldness each year in the US and about 21 million is spent on headache disorders.  That might sound like a lot, but it is 50 cents for each migraine sufferer and $28 for each person with premature balding. Headache disorders cause more disability than all other neurological conditions combined.  Baldness causes no quality of life changes or disability . . . except in self-image. So, due to the lack of research, our treatments are not the best . . .  but they are getting better.

The next problem comes in the availability of the good treatments that we do have.  There is a chasm between what we now know about headaches and their treatment and the care that most patients get. Even among practitioners, there is very little knowledge of the current facts and treatment strategies.

Primary care providers really do care about their patients, however, they have been taught, just like everyone else, that it is not a real illness and it has no real treatments.  Neurologists are considered by society and especially insurance companies as the expert headache specialist.  Yet, most neurologists have only five or six hours of lectures about headache disorders. But that is four or five more than other providers, except for the true headache specialist who has had hundreds of hours in headache medicine education.  In Washington State there is one board certified headache specialist per 2.2 million people.  This is far worse than for about any other disease state.