A Nurse with Fibro: Hello Members, I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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A Nurse with Fibro

Mdaisy profile image
13 Replies

Hello Members,

I found this article and I thought I'd post it. Please remember this is an honest account of what many in the health profession think or have thought in the past of Fibromyalgia & associated invisible illnesses.

It is good this honest account has identified the stigma that can face the Fibro community and let's hope articles like this make people realise, as this nurse being diagnosed herself has brought the reality of 'pain' home.

nursetogether.com/a-nurses-...

Can I ask for a constructive conversation rather than any unhelpful comments towards this as this person is in my opinion brave to admit was part of this stigma culture, in the hope this will educate others.

I look forward to your thoughts

Emma :)

FibroAction Administrator

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Mdaisy profile image
Mdaisy
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13 Replies
Lucyhobbit profile image
Lucyhobbit

I think its a very interesting article and very brave of her to write too. The invisibility and unpredictability of fibro is our primary enemy and hinderance to supportive help and understanding. I'm sure as a nurse educator her personal experience with fibro will be an asset to her. Thanks for sharing it MDaisy

Betty67 profile image
Betty67

Very interesting, how many times have we be told can't find anything wrong, you're depressed, you're craving attention and met unsympathetic health people. I am sorry for her that she has had to find out the hard way a very valuable life lesson. Thanks for finding and sharing, hope lots of doctors and nurses read it as well.

nedd profile image
nedd

Thanks for sharing the link.

Her admissions were enlightening.

Took some courage as you say.

You get glimpses of the inability to empathise by those you pin your faith on sometimes.

But then I think it's so far from others experience how can they know.

Perhaps more training on the devastation of cynicism would be helpful.

It's lethal and counterproductive.

But would I be different I wonder.

One hopes but?

Shazzzy profile image
Shazzzy

Reading this has made me feel very grateful to the doctors and the hospital i attend. There is only one doctor that i detected has an unbelieving attitude. I have come across a neurologist who was very unhepful and very remote but isuspect that is his general demeaner. on the whole i have been treated very well.

Shazzzy

TheAuthor profile image
TheAuthor

Thank you Emma, I found this very interesting and inciteful. I have to be totally honest about this, as my experience with doctors, physiotherapists, consultants etc has been one of overwhelming offers of help and assistance! When I first got diagnosed and read the FibroAction website I was quite skeptical about Fibro myself. It was my own GP that sat me down and explained everything to me in a way that made sense to me?

Of course, now I am one of the biggest advocates of Fibro and will battle anyone who dare to ridicule or refute it's legitimacy. As a matter of interest, my COPD specialist (whom I saw last week) always asks me if my Fibro is affecting my chest every consultation that I have with her.

Thank you so much for this

Ken x

agtf1 profile image
agtf1

Very interesting thank you. We can only hope that in her new position she will be able make others aware how real Fibro is and teach them more compassion and understanding for those in pain - regardless of weather the medical profession can find a cause for it.

Maisie1 profile image
Maisie1

I work in mental health and some of the nurses class people with fibro as personality disordered. I have put them straight

luvmybabies profile image
luvmybabies

A very good read, & brave of the nurse to tell her story with honesty. Like many on this site I've been hospitalized & sent straight home gain because " there's nothing wrong with you" the frustration we go through every day really brings me down . Thnx for sharing xx

Kittyletmein profile image
Kittyletmein

Thank you for this. The fact that this nurse has FM and will be training nurses is wonderful. I wonder how many people in the medical profession also have FM and are advocates? Are there specialist interest groups for medics? Is there one for FM or should there be? Sorry for all questions just thinking out loud.

Midori profile image
Midori

I was a nurse and I struggled for 20 years with Fibro before diagnosis.

Thank you Emma.

This article was very interesting and yes it was very brave of her to come out and say about her own scepticism.

I must be honest myself and say that my own education began with my husband who suffers from CFS, that's when I realised how other people saw him. Usually, as a man with nothing wrong, lying on a sofa being a lazy so and so while his wife was run off her feet trying to look after the kids, work and make ends meet. After my own diagnosis I have had mixed reactions. The worst one was an older church friend of my daughter's who told her that "its one of those illnesses, tell your mum to just get on with it. Sit down if you must but for goodness sake get on with it". That in itself isn't so bad, she herself has suffered from FM for over ten years. So when some people who have this illness make others who have it feel like a complainer or malingerer how can you fight the health professionals?

My family thankfully have a better attitude, probably thanks to our experience with my husband.

Shadows-walker profile image
Shadows-walker

Hi it's a very interesting artical ,when they used the word fibromyalgia with me ,I wouldn't have it I thought it was a malingers condition ,I got told reactive arthrits as well which I was happy to tell everyone but it took me 2 years to mention fibro ,it's only been since jan that I have openly spoken about my illness and that was because I could bearly move at that time ,it's been a hard lesson to learn and I have had to eat humble pie because of my own ignorance, I still have trouble excepting my limitations and get frustrated with my self and my daughter for fussing over me as I want to do things myself ,I must also add I was married to a male nurse for 25 years and a lot of my out dated ignorant knowledge was force fed me by him ,as he came across as all knowing . My nan had rheumatism as she called it and would come down stairs sit in her chair in the kitchen ,and stay there all day ,until tea time then she would hobble to the sink fill the kettle and make tea then move into the living room when grandad came home , be in bed by 9 . That was her day . I think now maybe she had fibro to . Thanks Emma it does make you think ! Chris ps I have had this conversation with my GP and she told me fibro was real as did her partner in the practise I am very lucky and the fact they have known me a long time and were always telling me to slow down :-)

MKMale profile image
MKMale

Hello,

I decided to read the the article before I read and comment so I could give an open view of it. Firstly I'm so sorry that another person has to be suffering with fibro, yet alone it's taken first hand experience to change her outlook as a nurse is sad but all too true of a lot of the interaction with the medical establishment I am sure we all have experienced.

However I must say how brave and strong she is by telling her story and I thank her for that. As I have posted recently about both my ESA assessment and my PIP assessment the assessments were both done by nurses, and initial my heart sank, but they were both very understanding, and knowledgeable about Fibro and I can't express how they helped me experience as little pain/stress because of it as possible.;

Every person who knows how real Fibro is, is another little step forward, and being a nurse is fantastic, knowing that she will be in the front line of care which I am sure will only help other who have our friend Fibro.

I hope today finds you all a little better than yesterday.

Blessings Be

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