Dear Doctor, I Have Trust Issues
I have trust issues. "Why?" you ask. "Shouldn't we start out in a trusting relationship?" I wish, but it's really difficult. Here are the reasons:
According to the Migraine Research Foundation1, over half of people with migraine are undiagnosed, myself included for quite some time. I struggled with migraine attacks throughout my childhood, teens, and 20's and was always told I just had "regular" headaches. Finally a doctor caught the real problem in my late 20's. Maybe I didn't describe my symptoms well enough until asked by that doctor; I tend to understate my own pain. But years of hearing "try two advils instead of one," instead of asking me a few simple questions about my headaches, has taken it's toll.
One doctor instructed to take abortive medication up to five times per week if need be, and another advised to take it no more than twice per week. The general consensus seems to agree more with the latter, but when there is a lack of consistency of advice I don't know what to follow. Tapping into the migraine community can help mitigate some of this doubt, but I often feel I need to fact check everything. Is that trust?
Misconceptions of migraine
It can take time to filter through new information, but I still hear outdated facts, such as a diagnosis of "complicated migraine" or talk of the "migraine personality." Um, hello, it's 2017, not 1977. I've heard the most basic knowledge, such as the difference between aura and prodrome, being mixed up. So when you tell me something is part of the "aura" phase, or you think you know the root cause of my migraines, I have serious doubts.
One mistake is okay, but two?
When a trusted physician told me that coming off an anti-depressant cold turkey was "no big deal," I did as instructed. Then I experienced medication withdrawal that probably could've been avoided by tapering. One mistake, okay. I was willing to give the doctor the benefit of the doubt. Until 6 months later he told me coming off of an anti-epileptic drug was "no big deal." This time checked with my pharmacist and she told me to taper. No one's perfect, but it seemed like the doctor didn't care to learn from his mistake. I've seen this same story play out in the community over and over with different doctors.
I could go on, but you get the picture. Bottom line, I can't trust blindly anymore. But, dear doctor, despite all this, it's really not hard to earn my trust. If you show attentiveness and interest in the situation—listening, asking questions, encouraging dialog—that's usually enough. There are things I can do to make your job easier, too. I can be proactive, talk to others in the migraine community, do some research, and describe my symptoms better.
You know your medicine, I know my body, and with combined efforts we can be a great team. Dear doctor, help me get over my trust issues. Please.
How much has your migraine disease changed or evolved over time?