What I Want Doctors to Know as Someone With Erythromelalgia

I am, by nature, an upbeat person — that is, when my disease isn’t trying to drive me into the ground. I teach high school (yes, I still teach despite my illness) and it is demanding at times. I love my job and I swear that it is what keeps me young. I’m not old, by any means, but it keeps me on my game. Sometimes, though, my disease takes me out of the game, sits me on the bench and, like a defeated child, I am forced to sit on the sidelines. It is devastating for me. Right now, I am on the sidelines and I feel a bit broken.

Not being able to teach is tantamount to torture for me and this disease seems to know it. I have been sick for the past few months and it seems like it is literally feeding off it. I live in Northern Ontario and we do not have any specialists that focus on erythromelalgia. So, I must rely on my family doctor to do his best to keep it in check. I have traveled across Canada to see another doctor, but nothing really came of that. I am seeing a neurologist once a year, but even then, it is just to check in to ensure my meds are still working.

The horror story begins when I must make the dreaded trip to the emergency department of our local hospital. Unfortunately, I get sick often and the doctors are unfamiliar with my illness due to its rarity. The issue usually begins at the check-in window when I must explain to the nurse my medical condition and try to spell it for her. The looks of confusion continue, it seems, forever. I have started carrying around the information manual put out by The Erythromelalgia Association, so I could hand it off to medical personnel. It has made it a bit easier.

There are a few things I think are important for doctors to know:

1. If I must show up at the emergency department of a hospital, I am desperate. More than likely, I am in excruciating pain. Please do not assume I am a frequent flier and dismiss me. I wear a Medic Alert bracelet for a reason. My condition is a legitimate one and it requires your attention and concern.

2. Due to my condition, my veins do not get along with needles. I can almost guarantee you will blow the first vein you attempt to put an IV into. Please listen to my concerns. I know my condition well. I have been dealing with it for a long time and I know how my body reacts. I am more than likely tired, frustrated and a tad bit scared. Please be compassionate with me.

3. If I bring information in, please take the time to look at it. I know you are busy, but I also know that most doctors are unfamiliar with my disease. I am trying to help with my treatment as best as I can.

Most doctors are wonderful in their overall treatment. The problem is that they are not educated about this disease and therefore do not know how to properly treat it. My hope for the future is that we develop better medications and treatments so that others do not have to suffer in the same way we do now. For the time being, as I continue to sit on the sideline, anxiously waiting to get back into the game, I remind you to find solace in the little things. Read a good book, continue to converse with support groups online…whatever makes your heart happy. In the end, that is what truly matters. Keep fighting.

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