Yes there are many, many bad, bad things about this disease and there isn't a whole lot we can do about it, we have no control about what may/not come next.
What we can control, or rather have control over, is our attitude towards this disease. Sometimes we need help doing this and if we do it's in our own best interest to get it, I certainly have had help in the past and would not hesitate to avail myself of it again in the future should I need it.
Keeping up appearances is important to most people with scleroderma because most people with scleroderma are what? Women! We all know that a good appearance can bring with it that phrase about how well we look when we in fact feel awful and probably took so long to attending to our appearance that we began the process the day before!