Disbelief by others

One of the more difficult mentally things to deal with is people that hunk you are faking. I have a thirty year old daughter and her response was you know dad it’s fraud to go on SSDI when you aren’t really hurt. : ( I thought she had been raised better than that.

Unfortunately its not an uncommon response alongside the misunderstanding that when we say fatigue its a bit more then having a bad day.

If I were you I'd tell your daughter to wind her neck in and not comment on things she knows nothing about, harsh maybe but you don't need that sort of attitude

I just don’t get people that assume everything that they can’t see fake. I told her off but that wasn’t what I needed.

I understand your frustration , when you cant see it, its not there. I have been getting that too. I have been trying to educate my family and friends to let them know it doesn't go away. Any help you can get is worth it. \this is not an easy thing to deal with on a daily basis I have had cidp since November 2013 and I am on a rollercoaster right now. I hope your daughter will come to her senses and understand that you need support not judgement. Everyday is hard enough. do whats best for you and don't worry about others opinions. Life too short. Live it to the fullest.

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I was hospitalized for months after being diagnosed with gbs and then cidp because I couldn't do a thing on my own. Everyone including my father, could see how sick I obviously was and were very distraught. About 3 years later my father had heart surgery and also became acutely paralyzed during the surgery. Now I think there must be a genetic link to this. But the point I want to make is that when it happen to him he kept apologizing to me over and over. He said he had no idea how hard it had been for me and couldn't imagine the sheer hell of the situation until he found himself in it. We know as a parent how much we feel for our kids. I think it's telling that even under those circumstances of father daughter concern he admitted he didn't get the magnitude of the situation until it happen to him. I don't think how people respond to our illness is a reflection of us. It's a refection of them. Maybe not even bad intentions but more of ignorance. It used to make me fell hurt and angry, but now I just have mercy for them and that somehow gives me a deeper strength.

I hear ya. Just because I "look good" doesn't mean I AM good. But I think now that I'm using a crutch, scooter, stair lift, and wheelchair, it's more obvious that there is something "wrong."

My children had a rough time watching me this past year because I have always been the strong one. Probably the way your daughter sees you. This is the first illness I haven’t been able to smile away so I had to educated them. I don’t want their feelings hurt if I cant pick up the baby, hold my little ones in my lap, or can’t make it to a grand kiddos ball game put of town. But don’t feel bad toward your daughter. It’s hard to understand what you can’t see. And, you can’t get SSDI if you don’t deserve it these days… Just throwing that out there…

That’s kind but at thirty she is no longer a kid learning to be an adult.