Communicating Pain and Disability
It can be difficult to communicate the pain and suffering of migraine to your doctor, particularly if your migraines are chronic or intractable.
Pain is subjective
Even the best medical technologies can’t see or “measure” migraine. Doctors rely on patient reports to tell them what is wrong, but pain is subjective. Pain scales are little help: one person’s “8” migraine might be another’s “5”. Is there any objective way to measure the impact of migraine on a person’s life?
Reporting the disability associated with migraine
One potential way to get around this problem is to report the “disability” associated with migraine. Instead of telling your doctor how much your migraines hurt, try talking about the ways that migraine interferes with your life. Tell your doctor if your migraines are making you miss work or school. Are you too scared to schedule time with friends because you might get a migraine? Tell your doctor! There is evidence that doctors are more sympathetic to reports of disability than they are to reports of pain.
Recognizing this, headache specialists have developed a questionnaire called MIDAS (Migraine Disability Assessment) to help patients quantify the number of days lost to headache disability. You might have been asked to take this test at your doctor’s office, but if not, you can try it out here.
MIDAS is a relatively simple tool. It asks you to count the number of days over the last three months that you have missed work, school, housework, and social events. Your total score reflects the severity of your migraines. It can be a helpful way to track the effect that your migraines are having on your life. It can also be a useful questionnaire to bring to your doctor’s office.
Needing a tool for chronic migraine
That said, MIDAS is probably a better questionnaire for those who have episodic migraine than those who have chronic migraine. Some of the questions that MIDAS asks might not make a lot of sense to a person who has a migraine almost every day. For example, MIDAS asks, “How many days in the last 3 months was your productivity at work or school reduced by half or more because of your headaches?” How would someone answer that whose entire life — including his or her career choice (if, indeed, they are still able to work with their migraines) — has been shaped by chronic migraine? Or question 5, “On how many days in the last 3 months did you miss family, social or leisure activities because of your headaches?” How would someone answer this if they have no longer schedule leisure activities because their migraines are so bad?
We need better ways of communicating pain and disability to doctors. MIDAS offers one solution, but I don’t think that it meets the needs of people who have chronic migraine.