“You’re the first person I’ve seen with that particular problem,” he says, halfway between explanatory and apologetic.
I nod, trying to convey as much reassurance and understanding as I can. “No, it’s okay– I’ve had that happen a lot.”
Which feels like a really, really weird thing to say to a doctor.
Like, a few steps away from hey-we-decided-to-name-it-after-you weird.
It’s not necessarily a bad thing, though– this visit went well otherwise. If I’ve learned one thing about having intracranial hypertension, it’s that the measure of a good doctor is not necessarily how much he or she knows about it. I’ve had some pretty bad doctors who knew plenty, and some pretty good ones who chose to listen to me and research the latest findings on the disease. I’d pick a compassionate new doctor who’s willing to work with me over someone who ‘s basing their treatment of my (pretty atypical) case off of their encyclopedic knowledge of information that hasn’t been current for a decade.
Having to advocate for yourself is a pretty big issue with rare diseases (and some that aren’t so rare). I vividly remember a discussion with one ophthalmologist about why I wouldn’t let her use anesthetic drops in my eyes (“Because I’ll lose consciousness” seemed like a compelling enough argument to me) that ended with an alleged phone call to the neurology department of a local hospital, me waiting six hours at said hospital, then finding out that they A) don’t have a neurology department, and B) wouldn’t have given me a diagnostic lumbar puncture even if they did. Needless to say, the next afternoon found me demanding a referral to someone who wasn’t a complete assbasket.
That can be pretty hard to do with a chronic illness, especially one that can turn really ugly really quickly. If things went from bad to worse and I ended up with really high pressure– or, fate forbid, a brain infarction– I’m not going to be in a position to speak up. I have some information written down to give to my S.O. in the event of a catastrophe, but he isn’t my next of kin and is therefore really limited in what he can do. It’s scary, but the best things to do is be prepared and try not to worry too much.
If you’re in a position like this, there are a couple precautions you can take:
- Have a MedicAlert bracelet.
- Know who your legal next of kin is. If it happens to be someone you do not want to be able to be responsible for your care (like an estranged sibling or abusive parent), see what you need to do to change it.
- Keep your emergency contact information up-to-date with all of the doctors you see regularly.
- Create a list of medications, allergies, adverse reactions, and other health information. If you end up being taken to the emergency room by someone, make sure they have a copy of the list in case you lose consciousness or are otherwise unable to respond.
- When it comes to non-emergency care, don’t worry about being pushy or off-putting when it comes to the important stuff. It can be difficult to pull off, especially when you’re dealing with a doctor you have to see regularly for a prolonged period of time, but it’s important to remember that there is no reason to accept being brushed off when your health is at stake.
Here’s hoping all of your doctors will be understanding, kind, and knowledgeable.