Who do I blame for my beliefs about myself because of migraine? No one. I can’t single anyone out because I can’t deny the cultural context in which my notions were formed. (Yes, I know that sounds like grad student speak. Stick with me anyway.)
Think about how few doctors understand migraine today and how much is still unknown about how migraine works in the brain and body. Now consider how paltry the knowledge was 25 years ago, when my “headaches” became chronic. Without one-sided pain or a visual aura, a pediatrician or internist would not consider migraine as the culprit.
There was no way to verify or quantify my ailments when I complained of symptoms like nausea (but rarely vomiting), ear pain (but rarely any sign of infection), and dizziness. Add to these factors that the symptoms typically came on without warning and also lifted suddenly, often leaving me feeling perfectly fine on weekends. If I didn’t know what I now know about migraine, I, too, would probably think a child was making up her illness.
Remember that 95% of the world’s population has a headache at some point. For most of these people, a headache is mild and easily remedied with an OTC painkiller or a little time. Headaches are dismissed as no big deal because they are not a big deal for the vast majority of people.
I no longer refer to the pain I feel with a migraine as a headache, but as head pain. This is a new realization, one I didn’t have even eight years ago when I named this blog. For a kid, pain that occurs in the head is thought of as a headache. I had no words to explain or even a way to conceptualize what was happening in the physical area of my head as something other than a headache.
Furthermore, society dismisses the significance of illness altogether. Cancer and other life-threatening illness are treated with reverence and fear, but their true impact is also minimized. People who push themselves beyond their physical limits and refuse to acknowledge the possibility of death are praised for their bravery. Acknowledging how physically devastating treatment can be, that the odds of survival are low, or fear of death is considered “negative thinking,” which is taken as a sign the person isn’t trying hard enough.
An illness that has no visible signs (to the untrained eye), no diagnostic tests to prove its presence, is not immediately life-threatening, and has “headache” as its primary feature has little hope for being taken seriously. Never mind that the World Health Organization determined that severe, continuous migraine as disabling as quadriplegia and that chronic migraine is responsible for more years lost to disability than every other neurological illness combined*. These and other facts and statistics are painfully slow in spreading to the public’s consciousness. As much as my advocate’s heart doesn’t want to believe this, an illness with as much baggage as migraine may never be recognized as the life-changing, debilitating scourge it can be.
I wrote Migraine Beliefs because I know I’m not alone in internalizing these cultural messages. The harsh, harrowing truths I acknowledge are the reality of living with a poorly understood and highly stigmatized illness. I can only play a small role in raising society’s consciousness about migraine, but sharing my truth helps connect all migraineurs. If my words can reduce even one person’s emotional pain, loneliness, and self-blame, I have succeed.
*My headache specialist just shared this fact with me. The WHO report with that information does not appear to be online yet, so I can’t link to the source.