Two events, recently, have prompted me to seek your wisdom and advice.
Firstly, on a recent train journey I was queuing to get off, after not having a seat, despite pre-booking one, the train was rammed. I'm sure you can imagine, standing from Kings Cross to Leeds, sore knees, ankles, hips, desperate for a wee. An elderly Lady in front of me was struggling to get her suitcase down from the overhead racks. Every moral fibre in my body wanted to reach up and help her, my actual joints weren't having it. My shoulders were killing me. Couldn't move my arms above my head. The big queue behind me were tutting, chuntering and other disapproving noises yet to have names. Now to help you visualise, I am 6 feet tall, swim regularly and look fit and "normal". I could feel the distain and didn't need to be telepathic to know what everyone was thinking "Why wasn't this big bloke helping this poor old lady?"
Should I endure the physical pain to lessen the public shame?
How are we supposed to respond in these situations?
I pushed her out of the way and ran off, crying.
No, of course I didn't! Another, obviously kinder than me, stranger, intervened and she was saved. I trudged out of the station feeling terrible. To this day I'm sure the staff and fellow passengers still refer to me as....that bloke...you remember.....he wouldn't....lazy git....
Secondly... well, I'm going to come back to that because I'd be really interested in what your experiences are and how you explain and deal with these awkward situations.
I've got a couple of positive examples as well which I'll also share but I'd love to hear your stories.
Thanks for listening and not judging me!
All the best
Written by
FergDon
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42 Replies
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Should have just said ‘sorry, got R.A., can’t lift things but sure one of these lovely people could help’ ..
winsome smile at tutters 😉 Easy for me to say: Hindsight's a great thing eh?😀
Best sign I’ve seen in disabled loo: ‘not all disabilities are visible!’ Obviously aimed at stopping the quick to judge as above. There are nice people too: some lovely elderly gent helped me unload all my shopping the other day because he cld see my hands were buggered, bless him 😀
Thanks for the response. Still reluctant to see myself as disabled so not sure why other people should. I'm getting more and more confident in dealing with the tutters but I think the issue is still me coming to terms with it myself. I used to be one of the tutters. Funny how things change!
Know exactly what you mean but has made me less quick to judge and more tolerant I hope: you never know what’s going on in someone else’s life, so there’s a little bonus 😇 Don’t like to think of myself as disabled either, c’est la vie eh?
You may think because you are a man that you should have come to terms with it.
If we are all honest.you don.t ever come to terms with it you don.t see yourself as disabled because you can allways think of someone worse off than you.
as you do also with age.
I keep saying i helped that old lady and my husband says .you are an old lady and possibly less able.
Don.t beat yourself up .you care some people who could help don.t.and don.t bad an eyelid.
I'd love to help, but not all disabilities are visible and I can't do that.
I'd love to help you, but I'm on chemotherapy and it makes me too weak to do that. (If you are MTX of course)
I used to react by being a bit sharp with people (out of anger at myself/my RA) but now I try to smile sweetly and say whatever suits best and might stop people in their tracks.
However, I have got to an age where very occasionally people do help spontaneously, and I hate it! So maybe struggling elderly lady didn't actually want to be helped?
I don't know but you did make me laugh ! sorry but you paint a picture that could be from Mr Bean. I wish I had a penny for the times someones said to me "you look so well and fit" when I feel like sitting and crying in pain. I'm lucky its not often and usually when I've overdone something. I still think I'm 30 and superfit........the mirror sayes otherwise. lol xx
I also never see myself as disabled more like slightly damaged and swollen round the edges. I also do agree with helixhelix who rightly said sometimes elderly ladies can be not struggling perhaps are sprightly and not needing help. I'd be grateful of course if someone offered me their seat but they'd be saying I'm old........so maybe not ?
I sure did and hopefully I was'nt the little old lady !! lol xxx
Well, the 'saver' went home pleased they had helped someone. indirectly you allowed them to do that, so good on you!. You could have claimed the good feelings for yourself, but stepped aside. Commendable!
I know its really difficult, my OH hates it too. Its potentially harder for men as the presumption is you are strong and ready to rescue, even in this day and age. Anyway with this question you have given the non sleepers something to puzzle over in the wee small hours.
Your conscience shows that you’re a good person and obviously if able to you would have helped. You don’t need to apologise for it or feel guilty because you know in your heart of hearts that you would have helped anyone in that situation. As for the tutters.. you don’t know them, will prob never see them again so sod em. Don’t be too hard on yourself xx Sarah
Thanks Sarah. Yeah, sod em. Only this time calmly walking away with my dignity intact knowing that it's not a behaviour out of choice. I used to be a tutter. Funny how things change!
I believe there are badges for train travel, even though you would prefer not to advertise the fact you have debilitating disease. It may well have got you a seat on that train !! You will grow a thicker skin too. I am a little old lady so rarely travel on trains etc now. When I first got my blue badge years ago, I used to get funny looks as unable to use a stick due to shoulder pain and weak hands/wrists dispite having triple foot fusions. But looked well. My walking is dreadful now so less funny looks or I may well have a thick skin. Lol. X
I imagine most people do not know that one of the criteria for getting a blue badge is having a disability in the hands which makes it difficult to operate certain types of pay machines. I, too, cannot use a walking stick or similar aid because of badly distorted hands and wrist, elbow and shoulder pain. As someone else said, the problems are not always easily visible.
I'm afraid we just have to grow a very thick skin.
Although I am an elderly lady.....I look hale & hearty, and I often have to walk away if some one needs physical help. If I bent down to pick up something a frail looking person had dropped...I might well topple over & not be able to get back up.
Similarly, if someone who is visibly handicapped needs a seat on a bus .....my hands won't let me hang on...so once again I could end up on the floor!
I used to try to explain.....but don't bother now. I know I would help if I could......but sadly I just can't.
So don't feel bad FergDon......you know you would help if you could, & that is all that matters.
Tell them your terminally ill,which in effect we all are with RA. Technically we will all die with this problem and are never going to get better(i hate that word) ,xxxx
Hmm, if someone tutted in my direction Id likely say "Would you possibly help this person out as I have a health condition and can't". I'd like to say something less pleasant but will be nice x
Don’t dwell on what you “would have done if you could have done”. RA is hard enough on you on it’s own without you mentally berating yourself for your genuine inability to help and your perceived perception of your tutting public’s thoughts.
If they were truely concerned for the lady’s welfare they would have rushed to help. More likely they were anticipating a delay on being able to get off the train.
Sod em. Who cares. #noonedied!
She got her case and they got on with their day.
With this disease you learn to be more critical of other people’s lack of understanding of the impact it has on you mentally and physically. You have to to protect yoursef and maintain relationships with the people around you. They can’t see it and they can’t feel it so how can they understand it when we look ok ?
Do what you can when you can ... when you can’t dont.
Just remember while you were there using your remaining energy on feeling useless, the more able bodied were using theirs to clack their tongues ! But that’s where their efforts will have ceased, guaranteed they are not still clacking their tongues over it now x
Go easier on yourself your allowed, and the rest of the world ? Well they’re big enough and tough enough to sort themselves out.
Oh FerfDon. Sorry your feeling so frustrated. You know you would have helped if you could have. Please don't dwell on what others think of you. You have a kind heart, that's clear. They don't know you or understand.
Yes, I agree this disease sucks and having an invisible debilitating disease is so unfair. I keep telling myself I think they must have it wrong. It must be something else. Then my shoulders bite me reaching for things or carrying bags and my wrists give way cooking, hips walking etc... I morn for the person I was.
I came out of work tired, feet and hips and hands in agony, I had to get some food shopping too.
Sat on the bus stop seat, relieved for the weight off and rest. Then elderly lady and partner came up so I gave up my seat and stood up obviously. But I was in so much pain I thought I need it more than you today. I got home and cried because that day I thought god this is only going to get worse. Hopefully my meds will kick in soon and coming to terms will too.
I can't 'like' your post, jomojo because you sound so distressed and you have every reason to be so. I sincerely hope your meds work for you very soon and you begin to feel better. Ours is a truly sh*t disease. Huge virtual hugs
We all need to vent sometimes and if you can't do it here where can you? Life with our nasty disease is hard but everyone here knows what it's like. The disease is horrible and it sometimes feels that the treatment is worse. Civilians haven't got a clue and aren't they lucky.
I totally sympathise and good on you. I used to be very judgemental of people who wouldn't give up their seats. Making my judgements purely on appearance. Oh how things change!
I did want my story to provide a bit of humour in a difficult situation.
Humour is my coping mechanism.
Hope your meds help to to be able to find a balance.
Oops, 🙊FerfDon? Sorry fergdon, life just keeps on teaching us new experiences and lessons. Laughing is definitley the best medicine of all. Take good care.
I think this may make you smile. I was walking slowly across the road back to my parked car, close to the town where I live on Saturday. It was on a yellow line and only used by blue bage holders, when a very tall elderly man was struggling to walk with a stick, I stopped to allow him to go pass, when he said 'athletes first' I smiled sweetly and said 'I wish' and he replied 'oh I was going to ask you for a piggy back' we both laughed, I said 'maybe not' Humour goes a long way it made me chuckle all day. X
This made me smile. I can visualise Julie Walters and John Cleese playing those characters. We should create cartoon sketches with speech bubbles for invisible illness posters. Ha ha.
I love your imagination, so fits the situation. I agree with you, a great idea. So pleased it made you smile. Thank you, we haven't lost our sense of humour and he certainly hadn't. 😂 X
Its hard to know what to say. I get told when getting out of my car that I don't look disabled. I have RA and none cancer. I turned to the last one and said and you don't look stupid either. Our conditions are invisible and people are quick to judge. Maybe We should all go round with a sign saying RA sufferer. People will always judge us and I don't know what you could have done except explain to the person behind your condition but there again why should you/we have to.
Oh Fergus I feel for you - been there etc etc. Vanity prevents me wearing one of those 'Please Offer me a Seat' badges so I rely on the telepathy of others. I hate to ask for help but if it's offered I accept with a smile. The scenario you describe is of course worse because you're a man and so you're expected to gallantly spring into action (in the eyes of others)...in your shoes I think I might have said rather loudly "is there anyone without a war wound who might be able to help with this lovely lady's suitcase?". That way you're still being gallant, just delegating the job! It's a light way of signalling that a) you recognise her need and want to help but b) you are physically indisposed (for whatever reason). Face saved, pride intact, you can limp off with optional Monty Python walk.
My response is somewhat different then others. I feel like your feelings have more to do with our own acceptance of having a disabling condition then it does the actual issue.
"Acceptance" is such a hard word. I struggle mightily with it myself. I sometimes share why I can't do something but then end up feeling like a complainer. I think some day it will happen (I think??) but I'm not there yet either.
It's hard to go from healthy to sick, no matter who you are. But a chronic disabling condition that you have to learn to live with, the rest of your life? That's rough business.
ps I'm not that old, 46 and a woman and people have started asking me if I need help, and I'm insulted lol - even though I could probably use the help some of the time!
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