Originally Posted by teresakoch

You hit the nail on the head about "looking" just fine - it's hard for others to understand how sick we are, and there is absolutely no way to describe it in a way that those who don't have it can fully appreciate.

It's good that you have supportive parents - speaking as a mom, I know that they want to make sure that you are taken care of. You might be able to qualify for some government disability services, which might make it easier for you to get around. It's a tough call - being at home means that there will be someone around to keep an eye on you and make sure that you don't hit a crisis.

I think it must be harder to get this diagnosis when you are younger - you want to be able to get out and do everything that everyone else your age is doing, but your body betrays you. It sounds like you have a good attitude, and that is so important -