By Amanda Shelley
I have excuses to make.
I would like to apologize to all the patients I saw in my years of emergency care work 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 do not teach us about how these diseases affect the lives of our patients. They do not tell us exhausting that it has been incredibly for our patient to go to the office or that they will probably have to rest and recover for several days afterwards. They do not tell us that sitting in the chair in the waiting room hurt every part of your body that came into contact with the chair, or your clothes or your shoes. They do not 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 am struggling with fibro and still others to be identified autoimmune problem for a few years now. I know because I had to teach my young son how to kiss softly. I know because I’ve heard his friends comment on how much time I spend in bed. I know because I can no longer physically keep seeing patients in an office (thankfully, I am able to work from home in the emerging field of telemedicine). And I know that this good old “Fog Fog” is often ringing as my phone is the cut as I struggle to not forget the words I wanted to tell the patient I’m trying to help.
At first, I wanted to hide my diagnosis from my colleagues. There were still so many suppliers out there who did not even believe fibro was a real mess (I used to be one of them). But in the past two years of nonstop referrals to specialists, tests with eccentric, but no clear answers, testing of one drug after another, I learned that even though the medical community is opening up 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 do not see anything to worry about” four times during our visit. Really? Do not you think that having to do my work from my bed a few days is in regards to? You do not think that the isolation caused by not being able to go out and seeing things with my family is worrying?
It’s time for providers to stop looking at lab results and start looking at the entire picture. Even if providers do not have a cure, just a simple acknowledgment of what patients are going to do would be a big step toward bridging the gap between your reality and mine.