Positive and negative

I sometimes feel frustrated at scleroderma, because apart from some physical signs such as changes to the skin, there's no very obvious outward signs (in my current state). Being 30 and not inwardly feeling 30 sometimes (more like 80 when my joints are hurting), I find myself in a difficult situation when really needing to sit down, for example on a train, when there are no seats free.

If i had an obvious external sign, such as a leg in a cast, it would be far more convincing when asking someone to give up their seat, as they would be able to see a reason for me needing to sit down. With scleroderma, on the other hand, how does one go about asking someone to give up their seat? They may presume I'm just feeling lazy, or they may ask why, and then you end up giving your medical history to the whole carriage!

Another example is when I am out with friends and I feel I need to walk a bit slower, or just sit down for a few minutes to rest my feet. To them I look like another person their age, and so even when I say I am feeling tired they may not fully appreciate how tired I actually am.

So I feel there's both a positive and a negative in my current sclerodermic state (did I just make up a word?) - I'm pleased there aren't very obvious physical changes that passersby can detect. Yet I am at a loss of how to stress the difficulty of the disease to my peers and to members of the public when required.

What are your experiences of this and how have you dealt with it?

10 Replies

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  • Welcome to the world of unseen disability! I have very little skin involvement, but multiple autoimmune problems. Unless you really look disabled people just make assumptions. I,m sure one of the reasons i get so tired is because people just dont understand and i spend half my life trying to keep up rather than admit defeat. I work full time and i really shouldnt be, but its hard as i need the money to afford quality of life. I had to go to A&E today as the pain in my foot has got so bad, x ray shows that one of my joints has completely degenerated and i have bone spurs, but even hobbling makes me feel self conscious. Society is very pressurising, and my friends rarely ask how i am as i look ok, so its hard to talk to anyone too

  • Hi inkedup, thanks for your comment. I hope you didn't have to be at hospital for too long today, and that you're feeling a bit better now. What can they do about your feet to help alleviate the pain?

    I get what you're saying about friends too, because there's no obvious signs they can see, they sometimes forget that I can't keep up with them or can't do everything they can. On one hand I suppose this is a good thing, because it makes me push myself to continue as normal. But it definitely tires me out physically and increasingly mentally too. Sometimes i'm so tired that even making the simplest of decisions is too much for me.

  • I empathise totally. So often I'm being told how well I look, and I do for the most part (and young! :) if only we could bottle it we'd be rich). It is so frustrating though, as you do feel that sometimes people do think you're perhaps not as unwell as you're making out. xx

  • i get told i look tanned and really well and i too spend half my time trying to catch up and not asdit defeat. if i am out i push myself to keep going for fear of holding anyone up until i start hobbling with pain and then its obvious. I rarely go out without my husband as he is the only one who understands and even he sometimes forgets.

    I think it is good to not admit defeat but sometimes we can be our own worse enemies and push ourselves too far.

    My work colleagues although they didnt say it (i felt it) didnt believe i was ill at first. i was off work 2 months and sent to occy health.It was only when the occy health dr said he thought i had an auto immune disease and couldnt see me being back to work in the near future that they decided i was ill and sent me flowers!

  • Hello everyone, more people experiencing the every day problems that we face, if only most of us felt half as good as people say we look. Your all right in what you say, just because we look fine, it is assumed we exagerate our condition. Most days I feel like 'crap' but what can you do but carry on. I am fortunate enough to have a blue badge and am fed up having to explain to people that you don't have to have a physical disability they can see, to be disabled. Carry on the best you can, even though it might be at a slower pace than everyone else, we all know our own limits and should stick to them regardless of what other people think. Take care

  • Ah thanks for your comments - it is reassuring to know there are others out there with the same thoughts and feelings as me. Having such an uncommon and unheard of condition it's good to have found this place where I can correspond with fellow sufferers. I will go forth and know I'm not alone! :-)

  • I explained to my friends the problems I have and they are very understanding. We have a SILENT DISEASE that nobody can see ... Yes we do look well and when I went for Laser a couple of weeks ago I was asked if I had been away - but I had not - and it was suggested that I had the Scleroderma GLOW whatever that is ( he he).

    I also completely understand about standing on a train etc .. I do not work any longer so dont have to travel during rush hour (unless I have an early hospital appointment) but, I do remember having to stand when I did and as you say you wonder whether to ask for a seat - the pain was really bad and I used to get really bad pains in my stomach !!

    The condition also tires me out physically and mentally and each day is very difficult but we do the best we can xx

    Take care all xx

  • Oh yes the invisable disability... the worst one for me is when I drop something in the street or in a shop and have no chance of picking it up unless theres something very sturdy to lean on.....(I sometimes just say I have a bad back....)

    But I think on the whole I'm lucky not have anything too obvious.... it means things aren't too bad, allows me to look and pretend to be "normal" and so not always treated like a sick person....

    It's all part of the rich tapestry which is scleroderma!

  • Yes I agree richardjd, I think I am more glad to have an invisible disability rather than get stared at for having something obviously wrong with me. Like you it's a bit of a theatrical show when I drop something - particularly coins! One of the main things that scleroderma has affected is my hands, and I can no longer make fists with either hand - this makes things very comical when people give me change after buying something. They always put the note in my hand first and then pile the coins on top - there's no chance I can close my hand around the coins - they all fall out!! I'll be using my debit card from now on :-)

  • tammo i had to smile at your post. i am exactly the same But i find it hard to get the debit card out of my po]urse too and in asda at ther minute not only do they put the notes coins and receipt in my hand they put some green tokens for me to vote on which charity to help . washing my hair is hard work thats if i manage to undo the shampoo half of it escapes if i put it in my hand before i get it to my scalp.

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