If asked how I'm affected I tell them this.....imagine having flu aches and pains every day add to that the feeling of spraining both ankles and wrists then throw in being so tired you actually can't think straight with insomnia and NEVER having a day pain free that's an insight of some of how it affects me everyday.....i find it really difficult for people to understand but I feel explaining a little of how I'm affected does help rather than telling them every way it actually does....how do you… read more
From a dr's desk: I have an apology to make.
I’d like to apologize to all the patients I saw in my years working in urgent care who had chronic pain due to fibromyalgia or autoimmune disease.
I’d like to apologize for not knowing, understanding, and in some cases not even believing what you were going through.
You see, in physician assistant school, much like medical school, they don’t teach us about how these diseases impact our patients’ lives. They don’t tell us that it’s been incredibly exhausting for our patient to get to the office or that they will likely have to rest and recuperate for days after. They don’t tell us that sitting in the chair in the waiting room hurt every part of your body that made contact with the chair, or your clothes, or your shoes. They don’t teach us about how your family is impacted by your inability to participate in things, give care and attention to spouses or kids, or even make dinner.
But now I know. And I’m sorry.
I know because I’ve been battling with fibro and some other yet-to-be identified autoimmune issue for a few years now. I know because I’ve had to teach my young son how to hug gently. 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 up with seeing patients in an office (thankfully, I’ve been able to work from home in the emerging field of telemedicine). And I know because that good old “fibro fog” often makes it sound like my phone is cutting out as I struggle to remember the words I wanted to say to the patient I’m trying to help.
In the beginning, I wanted to hide my diagnosis from my colleagues. There were still so many providers out there who didn’t even believe fibro was a real disorder (I used to be one of them). But over the last two years of non-stop referrals to specialists, tests with quirky but no clear answers, trials of one medication after the other, I’ve learned that even though the medical community is opening to the reality that this is real, “they” still don’t get it.
This hit me again two days ago as I sat in an appointment with a rheumatologist who said, “I don’t see anything of concern” four times during our visit. Really? You don’t think that having to do my job from my bed some days is concerning? You don’t think the isolation caused by not being able to go and do and see things with my family is concerning?
It’s past time for providers to stop looking at lab results and start looking at the entire picture. Even if providers don’t have a cure, just a simple acknowledgement of what patients are actually going through would be a huge step towards bridging the divide between your reality and mine.
I am so sorry!!
Numb is how I feel. The insomnia is my worst enemy. I have 2/3 broken sleep every night, but my body refuses to sleep more.
Not even my husband understands but feel I cannot explain how I feel!
Head feels constantly heavy. Feel I drag my body everywhere. My brain takes a while to think straight or process. Joints hurt, headaches constant and autumn/winter has written me off. Feel like I have aged over night.
I simply ask “You know how you feel when you get the flu?” Then I ask them to explain that to ME! Then I say to them “That’s how I feel EVERY DAY, ALL day, plus add in no sleep” This helps put things in perspective.
All I say is I have fibromyalgia and I am in extreme pain every day. they really don't want to hear the whole story and I think what I say covers it pretty good.I do what I need to do and I don't worry about others.
We never share your personal information with anyone.