Fit to scream.
Oh my God. If one more person tells me "but he seems fine when we see him" I don't think I'll be responsible for my actions. Whilst everyone has problems, I know this, ours are ours and are not made any the less because "he seems fine when we see him". He's out and about doing this and that - yes he is. Yet what they just don't get is that whilst he's out and about doing this and that he's putting on a show, which stops as soon as he is home. They don't see the way he behaves in the house, they don't hear the things he says in the house, and whilst being completely selfish here - whilst going "I know it can be difficult sometimes" is a way of dealing with his illness to them it doesn't mean anything is any easier for us here at home.
I understand not wanting to accept this illness, I understand not wanting him to have this illness, I know it's a way of making it less worse than it is, but by Christ it doesn't make it any easier for me or our tiddlypops. What we feel and how we feel should not be brushed under the carpet because he's smiley and happy when he's there on "the hubby show". It's bloody difficult. It's hard work, and for us at home there is no reprieve because even when he's not here because he's out and about doing this and that he still comes home and we know what it's going to be like when he is here.
Telling me I'm doing a great job is nice, but I'm not. I'm failing epically at the moment. I have one child with Alopecia, I have one who I had crumpled on the floor last night sobbing her heart out because she can't take anymore and I have one who just pulls into herself. My children deal with things that "they" don't see, or don't want to and being told "it's his illness" doesn't cut it. That's their dad. They are too young to differenciate between daddy and ill daddy and why should they - I'm 37 and I struggle to deal with hubby and "hubby who comes round for a cup of coffee". I am cross and tired and sick of feeling like I'm making things up because he doesn't do that when they're about or he's there.
I am tired of feeling guilty for saying that it's difficult so I've given up saying it's difficult. I am tired of making things sound better than they are because of how others will feel, but I do it because it makes them feel better. Sometimes it is about us, and I shouldn't feel bad for saying that - but I do.