By Amanda Shelley
I have excuses to make.
I would like to apologize to all of the patients I have seen during my years of emergency care who have suffered from chronic pain due to fibromyalgia or an autoimmune disease.
I would like to apologize for not knowing, understanding and, in some cases, even not believing what you are going through.
You see, by attending a school doctor, much like a medical school, they do not teach us how these diseases affect the lives of our patients. They do not tell us exhausting that it was incredibly good for our patient to go to the office or that they will probably have to rest and recover for several days afterwards. They don’t tell us that sitting on the chair in the waiting room hurts every part of your body that has come into contact with the chair, your clothes or your shoes. They do not teach us how your family is affected by your inability to participate in things, to care for and care for spouses or children, or even to prepare dinner.
But now I know. And I’m sorry.
I know this because I have struggled for a few years with fibro and others to be identified as an autoimmune problem. I know this because I had to teach my young son to kiss gently. I know this because I heard his friends comment on the time I spend in bed. I know this because I can no longer physically see patients in an office (luckily, I can work from home in the emerging field of telemedicine). And I know this good old “fibro fog” often sounds like my phone is cutting while I struggle to remember the words I wanted to say to the patient I am trying to help.
At first, I wanted to hide my diagnosis from my colleagues. There were still so many suppliers who didn’t even believe fibro was a real mess (I was one of them). But in the past two years, non-stop referrals to specialists, quirky tests but no clear answers, drug tests one after another, I have learned that even if the medical community is open to the reality that what is real, “they” remain does not understand.
It struck me again two days ago that I made an appointment with a rheumatologist who said, “I see nothing to fear” four times during our visit. Really? Don’t you think having to do my work from bed for a few days is a concern? Don’t you think that the isolation caused by not being able to go and do things and see things with my family is worrying?
It is high time that suppliers stopped looking at laboratory results and started looking at the whole thing. Even if providers don’t have a cure, simply recognizing what patients will actually be would be a big step in bridging the gap between your reality and mine.