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?