Thanks, crying myself, I don't talk about it often, hurts too much.
It was always about how difficult life was for my mother, and yes, it was hard and we all believed we should be so sympathetic to my mother the victim, at the expense of ourselves. It was only when I had Ds that I realised I'd die for him if I needed to, and it would be my choice, nothing ever put on Ds himself.
So after my beautiful sister died, I started to get ill, and now am disabled needing 90+ hrs of care a week. My mother didn't speak to me for 4 mths before Christmas but went around telling all who would listen how stressful it was for her to have another ill daughter! Lovely.
Ok am waffling but bear with me, am psyching self up to say something big.
My sister was never diagnosed, she was the 'problem patient' who got told there was nothing they could do, and fobbed off. I think this was in part (great part) because my parents colluded and pushed this view themselves... They told her, she told her, that it was all on her head, she was making it up, she wanted to be ill. And my sister was so so scared, as her body fell apart and she couldn't get anyone to listen.
I got diagnosed with a genetic disease and partly because my 'family history' was so bloody obvious. Turns out ive aleays been in alot of pain but cos my mother had such a vice like grip on my reality... I didnt know. Even now, a physio or medic will ask me, how are you feeling? And i wont have a clue.
My darling love my sister, She had a text book symptom by symptom list, and yes it's rare, but nobody even bothered to look. She type was terminal, mine probably not. But if they'd have known what she had... She probably wouldn't have died how she did, when she did. She could have lived years longer, with proper treatment and management.