The Apology I Owe My Patients With Fibromyalgia

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.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Fibromyalgia

Young attractive woman, sitting on a window, looking outside, lonely mood

When You're Stuck in the 'Fibro Funk'

For the past two weeks I have been in a fibro funk. More pain, even less energy than usual, finding it harder to do simple tasks, etc. etc. I guess some would call it a flare — when your symptoms become worse for a short period of time. When I was in the pain clinic I [...]

My Illness Means My Husband Is the 'Better' Parent, and I'm OK With That

As I sat at dinner with my children one night, my 7-year-old asked me something so profound that I didn’t know how to react or respond. “Mommy, how come Daddy does everything for us and you don’t?” My jaw dropped. “What does Daddy do?” I asked. “He cleans the house and makes us dinner. He [...]

Real People, Real Stories: Fibromyalgia E-Book

Whether you (or someone you love) have just received a fibromyalgia diagnosis, have been a part of the fibromyalgia community for a while, or simply want to learn more about fibromyalgia, this book of stories is for you. This book is comprised of stories written and shared by people with fibromyalgia. You’ll read an honest, [...]
woman watching sunset

10 Good Things About My Fibromyalgia

A couple of weeks ago, I wrote about being in a fibro funk. The post ended happily enough with me emerging from the funk ready to tackle another day. That was exactly how I felt at the time. When I started my blog, I made the conscious decision to try and write only when I was feeling positive [...]