You see me smiling and laughing
You see me living my life
You see me like anybody else
But I’m hiding the truth
You don’t see the days I spend in bed
The days I can barely move
I am too fatigued, in too much pain
Those are the days I hide away
You don’t see the supplements I take
Praying they will give me some relief
I will try anything that might help
To feel just a little more human
You don’t see me lying awake at night
So exhausted I feel sick
Yet unable to drift away into sleep
The pain enough to drive me insane
You don’t see the pain in every step
Every breath, in everything I do
I hide it to live a normal life
In any way that I can
You don’t see the cancelled plans
The crossed out events in my diary
I wish I could go to everything
But sometimes my body doesn’t let me
You don’t see me crying in my room
Hiding from the world
When it has all become too much
And I want to be alone
You don’t see the appointments
The doctors who don’t listen
Trying to make others believe
That it is not all in my head
You don’t see the anxiety
The fears I hide from the world
That my life is passing me by
I cannot fully experience as a healthy person can
I choose not to show all the struggles I face
I’m happy to talk about it sometimes
I just don’t want sympathy or to bring the mood down
All I want is to live as normal a life as possible
Hello Fibro Blog 
Great post and exact representation of what we go through. Thanks for sharing and hope today is one of your good days 🤗
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Thank you 😊
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This is just so perfect, Bethan. So well voiced and I nodded along all the way. It’s so bittersweet, and I ached at the end because I hate knowing you and likely many others feel the same as I do. I wish I were alone in it because it’s horrible feeling like this and living this kind of half-life that others don’t see. This bit – “The fears I hide from the world, That my life is passing me by” – really hit me. I feel like increasingly as time goes by, like the weeks are blurring into months and suddenly years have gone and I’ve not been here, I’ve just existed.
Please know you’re not alone in your feelings. I wish I could offer something more positive but I just wanted you to know I loved this post.
Caz xx
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Thank you so much for your kind words Caz! It’s so good to hear I am not alone and we all relate to each other’s problems associated with our health. Also thanks for always being there and I know I always have your support xx
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Im 59 yr old male vorn with Stickler syndrome . Which meant cleft palate and two club feet all repaired in the first 5 yrs of my life . However I have always suffered with chronic pain , fatigue and as ive got older it gets worse . Even as a xhild everyone including my family thougyt I was a lazy child or hypochondriac it was so frustrating because theky didnt realise or understand . I worked until I was 35 then i couldn’t go on and had to convince the doctors and of course the dhs that I really couldn’t it wasn’t easy . I have raised a family but its been hard for them , for which I feel imensly guilty . Needles to say I as most in our position have suffered depression and stress and anxiety . It just never gets any easier . I only stay so as not to cause my family distress but often say wheen my time comes i shsll breath a sigh of relief , no more pain no more guilt . Sorry to be so negative but thats from my heart .
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I’m so sorry you have been through so much. Hang in there. Try to find something worthwhile and positive in your life to hold on to and keep you moving forward no matter how small it is.
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