Just a rant really, as I can't tell people in RL.
I lie in bed all day, every day, not all the time, but about 80-90% of my week is spent like that. I get so many people, generally when I first meet them, tell me I'm lucky. 'It must be SO nice lying in bed all day,' 'it must be great not having to work,' 'urgh, you're so lucky getting to do whatever you want.' These are nice, friendly, intelligent, educated professionals, many of whom are now good friends of mine.
I don't get it!!
I have M.E. It really has destroyed my life. I missed most of my secondary education. I was hospitalised for long periods where I was bullied by nurses and doctors (and on one occasion was sexually assaulted which absolutely destroyed me). I made it to university but despite having a fabulous time had to drop out because I was too ill to cope. I have had many painful surgeries (other health issues) which have been very demoralising and traumatic and painful. Six years of my twenties were spent completely housebound. I knew no one at all other than my parents. I have had one relationship because of this, although I have recently met a new partner which is really great.
I can't have children, I've lost many friends over the years. I haven't been able to have a career, when I wanted one very badly. I have been able to go on holidays which has been absolutely great, but these holidays have mostly been spent in bed. We're talking an hour on the beach per day, the rest of the time lying in a darkened room.
Because of the above I find it really, really hard when people tell me I'm lucky. I'm a smiley, friendly person because I just want to enjoy the time I get out my house, and because no one wants to be friends with someone moany, so I know it's partially my own fault I get people say this to me. It can probably look like I'm having a great life. They just can't see how much trauma I've experienced. But really, who says to a disabled person 'you're so lucky not having to work/getting to lie in bed.'
I want to scream 'I WANT TO WORK!' I want to be healthy. I want to have children. I want to go out hiking, and bike rides, and go swimming, and go out for drinks and stay out beyond 9pm. I want my life back. That isn't going to happen. It really upsets me, and I'm baffled people are so ignorant. I don't think it's people trying to empathise or just make a nice comment in passing, I really don't. They genuinely seem envious of me. Some 'friends' have made so many comments it slips into hostile comments and I've had to cut them off. I could cope if they were just trying to make me feel better about my situation.
Why are we so rubbish at dealing with disability? AIBU to think that people really should know better? It's not rocket science. You don't go up to someone in a wheelchair and say 'lucky you not having to walk anywhere'.