I know by now many of you don’t remember Mr. Dangerfield. He was a comedian who was born in 1921 and passed away in 2004. The life-long theme to his comedy was his catch phrase, “I don’t get no respect.” This is the plight of headache disorders, and why it would make anyone choose some other chronic illness, if they had a choice, rather than a headache disorder.
I used to think the problem was the fact that severe headache disorders were so rare. That is not true. Headache disorders are the fifth cause of disability world-wide, and they causes more disabled days than all other neurological conditions combined.
The real problem is that headaches are so common . . . at least milder ones. Virtually everyone gets a headache now and then. Not everyone gets a touch of MS, or a little bit of cancer, or a tad of stroke. So, when you have one of those last-mentioned disorders, you immediately get the respect and compassion you deserve from those around you.
I cannot count the times that a patient has told me that they reported to their boss that they missed work due to a headache, and the boss smirks and says something like, “Really? I always work through my headaches and they go away.” That’s what I’m talking about.
Headache disorders are a broad spectrum of syndromes. On the good end, (if there is a good end), is where someone has a mild headache a few times a year, and that is usually after some bad behavior, such as drinking too much or staying up too late. Then, in the middle are those who have a severe headache now and then, but not too often. At the bad end of the spectrum are many people who suffer tremendously from severe headaches that come several times a week, if not daily. We, as a clinic, usually serve those on the worst end, and we do it with great respect and compassion.
While virtually all headache sufferers are familiar with the quick dismissal of their symptoms by bosses, friends, parents, or in the worst cases, spouses; sometimes we don’t recognized the depth and harm of this disrespect in other areas. I want to review a few consequences that you may not have thought about in these terms.
I’m sorry to mention this, but another reason headache disorders have been disrespected is because it is most common among women. For a few hundred years, headaches were dismissed as a weakness of females or frail men. The truth is, some of the toughest people in history, like Napoleon and Joan of Arc, have suffered from migraine disorders.
The other night I watched the first episode of Ken Burn’s new film series, Cancer: The Emperor of All Maladies. It was hard for me to imagine that there was a time about 100 years ago when cancer was disrespected, too. Not because it was mild, but because it was feared. People didn’t like to talk about it or be around people who had it. Like with headache work today, there was virtually no funding or research. This gradually changed over time under the auspices of such fund-raising champions as Mary Lasker. She alone was responsible for raising at least a billion dollars for cancer research and ushered in many great cures and treatments.
Headache research gets a pitiful amount of funding when compared to far less disabling conditions, such as erectile dysfunction. Patients voice frustration that we don’t know more or have better tools for treating headaches. Therefore, many, understandable, fall for simple answers or treatments that are not supported by research. For the first time this lack of rescearch money is beginning to change. There is a grass roots movement called The 36 Million Campaign (see: www.americanmigrainefoundation.org), which intends to raise just one dollar for each migraine sufferer. Presently there is less than nickel spent annually in research per migraine sufferer.
Another aspect of funding that impacts patients is the poor reimbursement that headache clinics like ours receive. It is very hard to get young providers to study headache as a specialty because they know it is not very lucrative. There are fewer and fewer headache clinics because they are not viable financially. This is because good headache work takes a lot of time. It is much easier to sew up someone who has been mauled by a dog than to get to the bottom of a headache problem and create the most effective and safe treatment plan. Yet, insurance companies would pay many times over for the care for the dog bite because they see it as far more serious than “just a headache.”
Headache, as a reason for missing work or school, is often not taken serious by employers or school officials. This seems to be changing for the better. Legal disability is very difficult to obtain if it is based on headaches. Disability should be the very last ditch effort for headache sufferers, as recovery and getting back to full-time employment is the goal. Many agencies, such as private insurers and even Medicare, has language that headache should only be considered a factor for disability. We think that this is unfair, (as if back pain or other medical problems are far more serious).
I have run out of time, but I want to come back and talk about some of the other discrimination that headache sufferers face, and things we can do to start changing society.
J. Michael Jones, MPAS-C