The Unspeakable Bits; From A Life With MS
How can it be so? A year has passed since we resolved to speak the unspeakable. In that time we’ve had some pretty frank discussions about multiple sclerosis and sex, bladderand boweldysfunction, marijuana, divorceand more.
Unfortunately, MS gives us plenty more “unspeakables” to bring up, so we’ll begin 2013’s Unspeakable Bits with a topic that is a new experience – though one for which I had planned. It’s one that I now share with many others living with MS: not having access to a doctor with expertise in MS.
At the end of last year, my wife and I moved to a small town that is about an hour’s drive to the closest neurology clinic … but that clinic only operates on the 1st, 2nd and 4thMonday of each month, and then only from 9:30 a.m. to 1:00 p.m., and they handle primarily epilepsy cases. We’re several hours away from the nearest MS center (or “centre” as they spell it here in Ireland). I have gone from living in a city with a high concentration of qualified, caring MS specialists to (by choice and design, mind you) an area of the world that has more sheep than people living with MS (and more shepherds than MS docs).
Fewer doctors means fewer choices, which means it’s more difficult to find the “right” doctor for me. Although I titled this blog “Bad Docs, Wrong Docs & No Docs,” I must confess that there are very few really “bad” doctors out there. By bad, I mean inept, mean and unqualified to practice medicine. I may have had bad experiences, a bad rapport or just a bad feeling with or about one particular doctor. However, it’s so rare that someone is actually a bad doctor that I think we can (though I expect to see a few comments on exceptions that will prove the rule) move on to the next: Wrong Docs.
“Wrong” can be very subjective. If a doctor seeks to collaborate with a patient, one person might see that as not taking control of a situation. Conversely, another person may see a doctor who takes an authoritative “old-school” stance of dictating to a patient as overbearing and condescending. Switch up the patients and these two doctors might be the “right” doctor.
It is important to understand that our doctors, while experts in their field, work for us and we should have the final say in our health care. I often think of my healthcare team as a baseball team… a team of which I am ultimately the manager.
Finally, the situation in which I find myself: No Docs.
There are several areas of the country (and the world, I’m finding) that are sorely lacking in good quality MS services for people living with this disease. In the U.S., the National MS Society’s MS Navigator® program offers a pretty comprehensive list of service providers for most areas in the country. The problem is, of course, that people live all overthe country and MS doctors well … don’t.
So, we’ll open the new year of Unspeakable Bits with a conversation about your MS doctors. Discuss…
Wishing you and your family the best of health.