By Amanda Shelley
I have excuses to make.
I would like to apologize to all the patients I have seen in my years of working in emergency care who had chronic pain due to fibromyalgia or an autoimmune disease.
I would like to apologize for not knowing, understanding, and in some cases not even believing what you are going through.
You see, by attending school doctor, much like medical school, they don’t teach us about how these diseases affect the lives of our patients. They don’t tell us exhausting that it was incredibly good for our patient to get to the office or that they will probably have to rest and recover for several days afterwards. They don’t tell us that sitting in the chair in the waiting room hurts every part of your body that has come into contact with the chair, or your clothes or your shoes. They don’t teach us about how your family is affected by your inability to participate in things, give care and attention to spouses or children, or even make dinner.
But now I know. And I’m sorry.
I know because I have been struggling with fibro and others to be identified as an autoimmune problem for a few years now. I know because I had to teach my young son how to kiss gently. I know because I heard her friends comment on how much time I spend in bed. I know because I can no longer physically see patients in an office (fortunately, I am able to work from home in the emerging field of telemedicine). And I know this good old “fibro fog” often sounds like my phone is cutting as 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 out there who didn’t even believe fibro was a real mess (I used to be one of them). But in the past two years of non-stop referrals to specialists, eccentric testing but no clear answers, testing one drug after another, I have learned that even if the medical community is open to the reality that what is real, “they” still do not understand.
It struck me again two days ago that I sat in an appointment with a rheumatologist who said, “I don’t see anything to worry about” four times during our visit. Really? Don’t you think having to do my work from my bed a few days is regarding? 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 time past for suppliers to stop looking at lab results and start looking at the whole picture. Even if the providers don’t have a cure, just a simple acknowledgment of what the patients are actually going to be would be a big step in bridging the gap between your reality and mine.