Feeling Useless? Migraine as a Disability
Migraine.com recently asked community members to finish the following sentence, “Migraines make me feel___________________.” You should check out the responses — they poignantly capture how devastating it can be to have migraine. But this snapshot also tells us something about how people with migraine think about themselves.
For example, the most frequently listed response was “useless.” It’s intriguing that the most common adjective in this word cloud is relational. “Useless” isn’t about pain or emotions--it’s about the way that people in the migraine.com community assess their social worth. When a migraine strikes, it’s hard to get to work, take the kids to school, or put dinner on the table. This is the burden of migraine. It’s the way that migraine shapes our lives.
Tool that measures days lost to migraine
A number of organizations have taken this into account by describing migraine as a disability. The move towards understanding migraine as a ‘disability’ began in the late 1990s with the development of the Migraine Disability Assessment (MIDAS) score, which is a tool that measures how many days a person loses to migraine-related disability. Some of you might be familiar with MIDAS — a lot of doctors use it to track how well their migraine patients are doing. It makes sense for doctors to ask their patients about disability, rather than pain. Pain is invisible and subjective. Days lost to disability can be counted.
In 2001, the idea that migraine is a disability received a real boost from the World Health Organization (WHO), which listed migraine as the 19th among all causes of ‘years lived with disability.’ WHO’s assessment was made possible by a calculation that assumes that the disability associated with having a migraine is equivalent to being a paraplegic. That is, the WHO presumes that when you have a migraine, you can accomplish nothing.
So as much as it stinks to feel “useless” when you have a migraine, this might be an effective way to communicate to others how migraine affects your life. Describing migraine in terms of disability, rather than pain, allows you to emphasize the objective burden of disease, rather than the subjective feelings associated with migraine.
Have you shared your migraine story with us yet?