The Apology I Owe My Patients With Fibromyalgia

[Kyla]

https://themighty.com/2016/10/apology-from-physician-assistant-to-fibromyalgia-patients/



Excerpt:

The Apology I Owe My Patients With Fibromyalgia

By
Amanda Shelley
Contributor
I write about Fibromyalgia chronic pain due to fibromyalgia or autoimmune disease.

I have an apology to make.

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...

 

[purrsian]

Wonderful link. Although it's sad for her that she has to actually experience it to understand, which isn't her fault, because doctors are taught to think a certain way. I watched a Ted Talk yesterday where the daughter of a lyme sufferer spoke about the importance of 'story' and how it could help doctors understand conditions more. She said doctors currently use story for diagnostics (think House and how they use story to create a picture of someone's life to identify potential causes of illness) and for psychological therapy. But she stated that sometimes, you just need to look at the story as just the story. The way an illness shapes lives. I thought that was a really interesting way of explaining it, because many problems we have with doctors is because they see us as lab results and symptoms, without understanding the story of our sick lives.

 

[undiagnosed]

From the article:

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.

This is the fundamental issue with healthcare. It's laughable the responses I get from doctors denying symptoms or saying it must be psychological. Short of going through what this doctor did and experiencing a disease first hand, they won't be able to understand. It's also why I think doctor's and the government should not have authority over patients for ordering tests or seeing specialists. How can someone who fundamentally can't understand what you are experiencing have that authority?

 

[Mary]

I've yet to receive any empathy from a doctor (after 18 years). I'll explain that my life has stopped, that I'm limited to 3-1/2 hours a day of light activity, otherwise I crash and end up in bed, and that I get sick every time I crash, etc. etc., and they just nod and smile as though I'm saying I have chicken for dinner. No one says, wow, that must be tough, I can't imagine it. Not once. I've always thought that they fear that if they responded like a human being, they think they might be reinforcing my delusions in my imaginary illness. One chiropractor once let a look of horror cross his face when I described my constant crashing and inability to do very much, but he wiped the expression off his face very quickly and just nodded like the rest.

No doctor has told me to my face that it's psychological or overtly denied what I experience, but they act like they think that way.

 

[Solstice]

I've yet to receive any empathy from a doctor (after 18 years). I'll explain that my life has stopped, that I'm limited to 3-1/2 hours a day of light activity, otherwise I crash and end up in bed, and that I get sick every time I crash, etc. etc., and they just nod and smile as though I'm saying I have chicken for dinner. No one says, wow, that must be tough, I can't imagine it. Not once. I've always thought that they fear that if they responded like a human being, they think they might be reinforcing my delusions in my imaginary illness. One chiropractor once let a look of horror cross his face when I described my constant crashing and inability to do very much, but he wiped the expression off his face very quickly and just nodded like the rest.

No doctor has told me to my face that it's psychological or overtly denied what I experience, but they act like they think that way.

Gotta be honest, my doctor responds in the same way. But when it comes to me getting treated by De Meirleir he and his assistents have been a great help and supported me all the way. Maybe it's just a thing they do to protect themselves?

 

[trishrhymes]

So pleased to read this article. I'm gathering short articles to have to hand to give to any medical practitioner who I think might be receptive, including GP, if I have the courage to do so.

 

[Mary]

Gotta be honest, my doctor responds in the same way. But when it comes to me getting treated by De Meirleir he and his assistents have been a great help and supported me all the way. Maybe it's just a thing they do to protect themselves?

I hadn't thought of it that way, good point -- but still, it would be nice to have just a little empathy ... to show that they get it