By Amanda Shelley
I have excuses to do.
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 is happening.
You see, by attending the school doctor, just like the medical school, they do not teach us how these diseases affect the lives of our patients. They do not tell us that it has been unbelievably tiresome 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 damages all the parts of the body that came into contact with the chair, clothes or shoes. They do not teach us how their family is affected by their inability to participate in things, pay attention and attention to spouses or children, or even make dinner.
But now, I know. And I’m sorry
I know this because I am struggling with fibro and still others to be identified as an autoimmune problem for some years. I know because I had to teach my little son to kiss softly. I know because I’ve heard 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 can work from home in the emerging field of telemedicine). And I know that this good old “Fog Mist” often sounds like my phone was the problem as I try hard not to 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 many providers out there who did not even think the fibro was a real disaster (I used to be one of them). But in the last two years of referrals to specialists, tests with eccentrics, but not clear answers, tests of one drug after another, I learned that although the medical community is opening up to the reality of what is real, “they” still do not they understand
Two days ago I was surprised again that I sat down on a date with a rheumatologist who said “I do not see anything to worry about” four times during our visit. Seriously? You do not think about having to do my bed work a few days is with respect to? Do not you think the isolation caused by not being able to go out and see things with my family is worrisome?
It’s time for providers to stop looking at the lab results and start looking at the full 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 in closing the gap between their reality and mine.