themighty logo

My Doctors Might Stop Searching for a Diagnosis, but I Never Will

One afternoon I was watching television with my mom and brother when a commercial for a prescription medication came on. My brother proceeded to say that the ad was for a very small target audience, and shouldn’t the doctors just tell the patients they knew were affected by that problem about the medication instead? That comment made me realize how naïve people with good health can be. Something you wouldn’t know unless you are well immersed in the chronic illness lifestyle is that doctors don’t always know all the answers.

Sometimes, they can’t give you a single one.

I have been on the search for answers all my life really, although it became dire last year when chronic migraines became daily chronic migraines. At a time when I needed them the most, answers couldn’t be found.

It has been a six-month uphill battle to find the source of the daily migraines. I feel like everywhere I turn there’s been a long wait and a dead end. I have attempted to see two different pain management doctors and I am currently waiting on the last neurologist in town to try his hand at my case. I fear the source hasn’t been found because it’s connected to my rare disease, multiple hereditary exostoses. In my own research, I found both MHE and migraines could be genetically traced to chromosome 8. Could this be the connection? Who knows. An even bigger fear of mine is that it’s a different, rarer disease that no doctor in this town has heard of either.

Over these past few months, I have found there is a shortage of doctors willing to do the hard work that goes into researching and diagnosing. My second neurologist never called to schedule a follow-up. The latest failed attempt in pain management ended in the doctor telling me there was nothing he could do to help me as I wasn’t an amputee – this one left me more puzzled than the phantom source of the migraines.

I often wonder how many of the doctors who couldn’t help me remember the girl with the disease they couldn’t pronounce when they go home after a long day at work. It’s easy for doctors to give up when patients are just a case file and a five-minute-long encounter, and even easier when that encounter is reduced to a phone call that sometimes never comes (yeah I’m talking about you, neuro #2).

This plight with migraines has shown me “the hard way” why I need to be an advocate for chronic illness. Where doctors may give up, I never will. I have accepted that doctors may never diagnose me, but do not confuse that with me accepting there may never be a diagnosis. I believe the answers are out there; if I can further humanize chronic illness in my search for answers, then I will consider the struggling worth it.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Grandfailure.