Fibromyalgia Action UK
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Guilt and Longing

We often refer to Fibromyalgia in terms of the symptoms, the pain and the guilt. Guilt caused by our inability to be to others what we used to be before Fibro came into our lives. The pain of Fibro is not only physical but also emotional.

Every day I am filled with the wish to be my old self, to be the Mum that I used to be, to be the partner that I used to be, the sister, the friend, the daughter, the Aunt, the niece, the work colleague, the neighbour etc. In name and by definition I am still all of these but the actual 'role' that I fulfill within these areas of my life has changed beyond recognition. I yearn for and long to be the old me, to be my old healthy, fit self and to have the ability to fulfill these roles as I used to, the guilt and the longing is immense.

My thoughts tonight turned to how we as Fibro sufferers spend a lot of time feeling guilty about things we have no control over. My world is smaller, Ive lost friends and family because of Fibro, I beat my self up and shed tears.....but I think its time for this guilt and negative mind set to stop.

It is not my fault that friends/family etc cant or will not try to understand the impact that Fibro has had on my life, it's not my fault that they can not or will not adapt. They have a choice in how they a Fibro sufferer my choices have been taken away, I have had to adapt, I cant pretend that I am not ill, I cant escape my body, I cant go out to work, I cant busy my days with their 'normality', my normality has changed.

The loss we suffer is immense. My world has shrunk beyond recognition.

Tonight is another sleepless night which will flow into a fatigue filled day, bringing with it the struggle to achieve the simplest of chores and tasks, there will be pain and the inevitable 'Fibro Fog', all beyond my control and all very much my 'normality'.

Having Fibro (or should I say 'Fibro having me) robs me of the simplest of pleasures. Tonight as I was standing at the back door stressing about not being able to sleep I happened to look up into the sky, it was beautiful and filled me with awe and happiness, I noticed how clean and fresh the air smelt, heard the rustling of the night breeze through the trees, it was peaceful and beautiful. I was filled with a sense of immense pleasure and peace quickly followed by a more in-depth understanding of the loss brought about by Fibro, I realised that Fibro shrinks our world making it difficult to see and feel the pleasure that can be found in the simplest of things, it led me to thoughts of how I waste energy stressing and feeling guilty about things I have no control over and how I waste precious time and energy feeling guilty about and trying to be to others what I can no longer be.

Fibro robs us of so much, why waste precious time and energy trying to be to others what we can not be. I am going to stop feeling guilty, the pain of Fibro and the loss suffered is more than enough without adding to it. Those who truly understand are still by my side, others have walked way, I love them all equally. Im shedding the guilt and seeking out the simple pleasures that have been lost as a result of wasted time and energy.

Off to bed now, its light and the birds are singing!

Love and gentle hugs to all,


5 Replies

Morning I enjoyed your post but never feel guilty I so disagree with that guilt to me means wrong doing done by you probably to others. That is not fibro, please do not stand enjoying the beautiful world with any guilt in your heart it is not you you have done no wrong. Fibro certainly commands our lives making our world shrink. So please beat this rotten disease be strong happy and above all remain positive.

Have a good day.



Never feel guilty, as Gins says - just make sure you enjoy those things which are left to you. In common with all sufferers of chronic disease, our lives change, but we can still salvage some pleasure and usefulness, and it's better to concentrate on the good aspects rather than the bad - which we can't change!

That was a very nicely written post, Bethy - you have talent in the writing department. Fibro can't take that away from you, so maybe you could use your ability to your advantage! :)

Moffy x


Very nicely put... Yes fibro and it add ons and extras ...changes our lives forever but with acceptance we can find the joy in the things we still have and can do

VG x


Hi i am going through the same problem at the moment. My mum lives a long way away from me was a bit down last week so shes rings which i might add is not often as i only have mobile cant afford to ring her she says do you want to come and stay with me i would have to sleep on a pull out bed on the floor which i have done before years ago but i cant do it now i cant sleep on it have trouble getting to sleep in my own bed I said no i cant i feel so ill i have thyroid problems as well havent heard from her since or my sister no body in my family comes to see me even though they drive.I got off the phone i was so angry why do people not understand how bad this is and how i feel every day and how this has destroyed my life i,ve gone from working, going out doing everything to having to give up my job of 11 years i carried on working when i was diagnosed with fibro at the beginning to this so i have come to the conclusion that i am going to look after my self and stop worrying about everybody else cant deal with the stress anymore xx


That was very well written Bethy and very touching, I was feelingly just the way u are after Christmas and that is what made me try to find a site like this, it really helped me to tell others how I was feeling and also to know that there are other sufferers out there having the same things as u, so instead of thinking I had a chronic desease it was the norm for fibro sufferes, esecially the chroni something lol that grumpy was saying, I really thought I had cancer and was afraid to go to the docs, but after readingwhat grumpy said I went and of course it was just that, wll not JUST that but at least it put my mind to rest, ....gentle hugs to all Dee x


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