I have an apology to make.
I would like to apologize to all the patients I saw in my years of emergency work who had chronic pain due to fibromyalgia or autoimmune disease.
I would like to apologize for not knowing, understanding and, in some cases, not even believing what was happening.
You see, in the medical assistant school, 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 incredibly tiring for our patient to get to the office or that they will probably have to rest and recover during the next few days. They do not tell us that sitting in the chair in the waiting room damages all the parts of your body that made contact with the chair, your clothes or your 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 have been fighting fibro and some other autoimmune problems yet to be identified for some years. I know because I had to teach my young son to hug gently. I know because I’ve heard friends comment on how much time I spend in bed. I know this because I can no longer physically see patients in an office (fortunately, I have been able to work from home in the emerging field of telemedicine). And I know because that good old “fibro fog” often makes it look like my phone is being cut while I struggle to remember the words I wanted to say to 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 believe that fibro was a real disorder (I used to be one of them). But in the last two years of direct references to specialists, tests with strange but not clear answers, tests of one medicine after another, I have learned that although the medical community is open to the reality that this is real, “They” still do not they understand
This hit me again two days ago when I sat down on a date with a rheumatologist who said, “I do not see anything of concern” four times during our visit. Really? Do not you think that having to do my work from my bed some days is worrisome? Do not you think the isolation caused by not being able to go and do and see things with my family is worrisome?
It is time for suppliers 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 really going through would be a big step in closing the gap between your reality and mine.