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
Willow, thank you so much for another lovely poem. It really hits the spot. I didn’t realise that so many people feel as I do. Thank you Erica, you put your feelings so well. Thank you both x
It’s a bit like mental health, something that can’t be seen, unlike a broken leg that people can see and empathise with. I am constantly being told how well I look, which is meant sincerely I’m sure, but it’s what you can’t see that makes our lives different and often difficult.
Thank you @Spimula. I agree with you 100%! I saw some friends this week who I don’t get to meet up with very often. I lost track of the number of times they said how well I was looking. It’s hard because they mean well but if they only knew everything I am struggling with. In fact it had taken a lot of courage and determination just for me to be able to travel and be with them.
Just goes to show that you can’t tell what is going on inside someone.We are all guilty of it for example if someone calls in sick from work ,”Oh he looked alright when I saw him yesterday !”
This does indeed hit the nail on the head, I have bipolar disorder, so I have had this alot for the majority of my life. So hearing it in relation to physical health that can only be seen at times with scans and tests I can relate totally.
I havnt seen that, but I will definitely take a look. Physical health can impact mental health massively and vice versa. And it so important to talk about that
Hello @Spimula and everyone who has commented on this thread. I am still struggling with comments on how well I look. Actually my physical pain has increased lately but of course no one can ‘see’ that. Feeling frustrated this week and not really fully understood by a kind but misguided physiotherapist, I wrote the following …
HURTING
People look at me and they don’t see pain.
They just see my face.
But the truth is I am hurting
And my thoughts are disturbing.
My body is letting me down
And the pain is making me frown.
Please don’t try to ‘fix’ me, minimise or dismiss me.
I need you to listen without suspicion.
Not to comment on my appearance
Or even my forbearance.
I just need you to hold my hand
And to understand.
Then, for a moment or two
We could sit in silence -
Just me and you. X
