Ok. Just had a friend round. I wasn’t committing to something as I was already out that day and knew I wouldbe tired.
Then he used the words “ you look fine”, “Daves had a heart attack!”.
Just how do you deal with that? I currently look like I have mumps permanently, and he knows I’m super self conscious. When I’ve explained my fatigue before he’s promised to understand, and yet everytime I’m hesitant to over stretch myself I get zero empathy.
Im struggling to manage my job never mind social events.
Oh goodness me…..I totally hear you. You have just about summed up what many of us feel. So sorry you are having to push yourself, without appreciation from others about how things really are……
I’m almost two years post stem cell transplant, following the fairly brutal treatment for Acute myeloid leukaemia (Acute myeloid leukaemia (AML)). And I’m a bit stuck now, with crashing fatigue. I realise it’s likely the trade-off for still actually HAVING a life. Everyone else has moved on. And they assume we have too, don’t they.
Honestly, when people (well meaning) say ‘You look well’ - which is most days for me - I tend to just say it how it is. And on my bad days, it’s a response like “Yes, but I feel like ***!”
People really do make assumptions, if we don’t tell them. And I guess it’s understandable, I might well have done the same at one time. It’s certainly worth being open and honest with those closest to us. Not asking for pity, just awareness and understanding.
Not sure if this helps, or not?? I just wanted to say how much your comments resonate, and you are most certainly not alone x
Thank you so much @Fmorris for raising this topic. As @Ledgell has said, I am also 100% with you on this one. It is so difficult and one of the hardest aspects for me of living with blood cancer which I call an ‘invisible’ condition. I have lost track of the number of friends and relatives who say “But, you are looking so well!” Sometimes I feel able to say something like “Looking well and feeling well are two different things” and at other times I just groan inwardly! People are so quick to make assumptions and I guess in the past I have done the same but I am trying not to do that anymore. Here is a poem I wrote a while ago. I hope it helps a little.
It’s so difficult sometimes as you know they mean well but it just doesn’t reflect how you feel inside.
I have really swollen lymph nodes in my neck and probably look like I have a permanent case of mumps too but people always say they don’t notice them . I on the other hand don’t recognise myself when I look in the mirror.
Oh @Willow that is absolutely brilliant it hit’s the nail on the head.
Yes, I know I put on my smiley default mask and because I am a walker my complexion appears a healthy pallor, but nobody knows how I am feeling or doing inside.
My pet hate is people saying ‘my word, you do look look well’ and my response and language depends on how well I am feeling.
I have given up trying to explain how I am really feeling, sometimes I will tell them how I am not doing.
Thanks so much again @Willow and look after yourselves everyone