Dear Willow well done for expressing how it is for you and in doing so saying actually what so many of us feel and experience - you are most definitely not alone as we all exactly “get” how it is to be on the receiving end of human insensitivity - I don’t know why it is people can’t empathise more and as you rightly say just listen - the big difference between hearing someone’s words and actually listening with time and empathy - I have only had to draw a line that it’s not actually personal to me (although it each time definitely feels that) but a sad human trait to judge someone’s situation from the superficial outward appearance - it is the great value of all these forums and patient supports so kindly provided by caring charities that keep us going and touch base with others who exactly know the lived experience of disease that is there each day - I think our comfort has to be in each other and the fellow feeling that is felt from that as we all get it. You take care girl and know all the friends here are on side with you. And thanks for the poems so so good and helpful 
Thank you so much @Jilly20 for your kindness and understanding. You have expressed it so well. You are correct, I must try not to see it as personal when people say these things. Thinking of you. Willow x
Morning @Willow - thank you so much for sharing that. It is such a lovely, moving poem, and it’s been wonderful reading all the supportive comments on this thread today.
I can really hear your frustration. There is something so draining about being told “you look well” when you feel like your body is letting you down on the inside. It’s particularly tough when even the professionals, like your physiotherapist, don’t quite seem to grasp the reality of what you’re living with.
Your words about needing someone to “listen without suspicion” and simply sit in silence will resonate with so many of us here who live with that “invisible” side of blood cancer.
Hoping next week will be a better week for you.
Thank you so much @Jules for your kindness and understanding. Yes, to receive all the supportive comments, including yours, has been very uplifting. Thank you to everyone for taking the time to respond. I agree with you that it is particularly tough when the medical professionals don’t ‘get’ it but it helps to know that others living with blood cancer understand. Willow x
Your poems are incredible @Willow. They hit the spot every time. Thinking of you and holding your hand virtually xx
Thank you @Spangleystar for your kindness and understanding and for virtually holding my hand! I am thinking of you and all you are facing. Warm wishes Willow x
Sorry to raise this issue yet again! I am still struggling with comments about looking well so I have written another poem on the subject.
LOOKING WELL
Please don’t say I’m looking well
I’ve heard it many times.
It feels dismissive -
As if all that matters is my appearance
And if you think I look okay
There can’t be much wrong with me
So there’s nothing more to say.
Do you think I am exaggerating
When I tell you how I am?
I’d rather you didn’t ask
If it’s all about my outward form.
Living with blood cancer
Isn’t like having a broken arm
There’s nothing to be seen.
The fatigue and pain doesn’t show
And if you keep telling me
How well I look
I think I might explode.
It’s not just myelofibrosis
But cerebral palsy too
Plus other conditions
Hidden from view.
Muscle weakness
Fragile bones
A chronic cough
And damaged lung.
So please don’t focus
On my appearance
When there’s so much more going on.
Willow x
Oh @Willow You have put it into words so well, I am speechless, wow, so, so true.
One of my bestest friends, that knows me so well, said how well I looked just this week after me telling her so many times how I felt about ‘those words’ and what it was like for me having a hidden condition and all the side effects I live with and manage every day.
I know I often look like a Cheshire Cat so all I shall say is Grrrrrrrrrrrrr.
Thanks so,so much @Willow you are a very supportive star to us all on our supportive forum. Please always say how you really are doing and feeling on our forum, we will understand. xxxx
Don’t apologise @Willow and thank you again for writing another of your lovely poems.
I know it’s the thing people say most to me.
These days I simply smile and say thank you.
There would be little point in going into all that blood cancers and other complications bring.
It feels like it’s only those living with blood cancer or supporting those with blood cancer really understand.
Sorry to hear that your friend is still saying the words you told them you would rather they didn’t use @Erica
Take care both of you
Oh my, dear @Willow this writing is really emotive! If I might just say how much I love the sense of anger, maybe indignation at ‘looking well’ while feeling rubbish and the irony that others aren’t actually looking at you well enough… Amazing. You should copyright your work!
Hahaha yes to the “Grrrrrrrrrrrrr…” dear @Erica! Don’t know about you but I do let myself be a little more blunt with people these days, often when I need to remind them yet again of my risks in the sun, busy places etc.
To avoid saying the C word a lot I gave my diagnosis a name so I can be rude about it with friends and in public, and it’s always funny to me when someone asks who I’m swearing about 
You are so talented @Willow I love that you have this incredible creative outlet for painful honesty that helps you stay undeniably you 
xx
We all want to know the name now @Duncan 
Since reading your most recent poem this morning @Willow, I decided to have a go myself.
My biggest concern is the ‘How are you?’ The sympathy that shifts the equilibrium of friendship and creates distance. I’m finding this tricky to navigate.
Feedback gratefully received, it is more of a brain freeflow than a structured poem 
More than a Patient
I’m tired of the question
asked with tilted heads and careful eyes —
How are you?
I know the script they want:
the brave smile,
the tidy reassurance that keeps them comfortable,
Duty done, checked in.
But I am not a walking update.
Not a chart to be checked,
a pulse to be monitored,
a story to be handled with latex gloves.
I am more than a patient
I am still the one
who laughs — properly, freely, at the absurd, the clever, the unexpected bits of life.
I am still the one
who wants to talk about
the world, the weather,
the strange thing the cat did,
the film that made you curious.
Don’t fold me into silence
because you fear saying the wrong thing.
Talk to me like you used to, about the things you used to.
I am here, fully, stubbornly, unapologetically alive.
Let the illness be the quiet one in the corner.
Great @Spangleystar again you say it how it is for me too.
Brilliant @Spangleystar and great that the poems from @Willow have given you the inspiration to write your own
What you have written @Spangleystar is SO good! I am not just saying that, it’s true. I really like the way you have said, “don’t fold me into silence” for fear of saying the wrong thing. You are correct, we still want to talk about all the things we have always talked about. I am really pleased you have been inspired to start writing. I hope you have found it helpful and thank you for sharing your poem with us. Willow x
Thank you @Erica for your kind words and understanding. I really identify with your response of Grrrrrrrrrrr! Sorry to hear you have experienced similar reactions from friends. But I am grateful for this space where we can be honest and know that others ‘get’ it. Willow x
Yes @Duncan we would like to know the name you use??!! 
Haha @Spangleystar and @Willow now I feel obliged to share, but if you don’t mind I’ll keep the name private just in case it’s upsetting for other forum members, some who might even share the name
But I must say I am impressed with your writing @Spangleystar, how did it feel to get it out? Love the repeated line “I am still…” and how it reads like it’s an anchor. We are still us indeed.