Hi Pixel, I had hoped to respond to this last week, but busy days at work and Thanksgiving weekend conspired to keep me away.
I've been showing signs of AS since my early teens (childhood if you count lack of energy and 'growing pains'), but I was only diagnosed 4 years ago. That's 30+ years of being accused of being lazy and lacking in self-discipline. One of my teachers once told me that I had displayed the worst level of self-indulgence she had ever experienced. Granted, I had to lie down in the middle of her class (we sat on the floor in that particular class ... long story) because I simply did not have it in me to remain seated, which must have been somewhat offputting. And I would not be diagnosed for another 16 years after that, so we had no idea that I was actually ill.
My psychiatrist once (more than once actually) told me that the fact that I couldn't keep my house clean meant that I didn't have the self-discipline to do so. In fact, I would get home from work and crash, having expended all my energy resources to get through the day. I've been like that for years. And I took everything that I was judged to be to heart. I was working full time, acting/directing/singing in my off hours (sometimes working the equivalent of a 12 to 18 hour day) and still tell myself I was too lazy to clean. Alot of what I accomplished, I did to prove that I wasn't lazy ...
Now, I realize that the people who said those things to me didn't have all the information. I can't get mad at them, since they didn't know any better. However, I do have one friend who lived with me when I was diagnosed, who saw me at my worst, who knows that until Remicade I struggled to keep myself above water on the energy front, and who still decided I was goldbricking when it came to cleaning. That hurts. As much as I love her, I barely call her anymore, because really, I don't need people in my life who are going to judge like that.
Of course, if it's family, it's a different thing altogether. I don't envy you that and wish I could come to your place and shake people to get them to see reason. All I can really suggest is that they come here and learn from those of us (including you) who live with this. Perhaps if your wife can understand a little better, she can explain it to the kids.
Hugs,
