What does diagnosis mean to you?
Getting a diagnosis is a crucial moment in our experiences with the healthcare system. A diagnosis organizes our symptoms and gives us a name to use when describing how we feel. A diagnosis also provides us with a map, of sorts, which helps guide medical care and treatments. Bureaucracies depend on a diagnosis — for example, health insurance companies use diagnosis to decide how much to pay doctors. And the National Institutes of Health, the largest funder of biomedical research in the world, allocates research funding by diagnosis.
Diagnosis also helps determine which symptoms are part of a disease and which aren’t. As a result, the experience of getting a diagnosis can be really validating for patients. It can give patients a sense that what they’re experiencing is legitimate and real. It also helps organize patients’ attempts to find help for their symptoms. Most medical websites and electronic support groups are organized by diagnosis, (Migraine.com included).
Unfortunately, it can take a long time to get a migraine diagnosis. In the US, only about a third of people who have symptoms consistent with migraine report that they have received a diagnosis of migraine. Those who have a diagnosis may have had to wait years to learn what is wrong with them.
It took me about 17 years to get a proper diagnosis. I only really understood that I had migraine when I discovered that Imitrex made me feel better. It was a very liberating experience. If a pill could eliminate my pain, then maybe I wasn’t crazy. Plus, now I had a name to put to my experiences. I could finally seek appropriate help.
How did you feel when you received your diagnosis? Was it liberating? Or was it frightening?
Have you taken our Migraine In America Survey yet?