I have found over and over, that despite me explaining my illness and disabilities, what I can and can’t do, people close to me STILL expect me to behave and have the energy and function of a non-disabled person.
Eg. My mother continues to push me to go on holiday with holiday with her, despite my explanation that I can’t walk more than 100meters, and a ‘holiday’ would just cause me more pain.
My mother telling me that I can just ‘finish that later’ when she demands I spend 3 hours with her having lunch. Those there hours are my entire upright day. there IS NO ‘later’ !
My friend telling me to ‘just pop in for a little while’ at a party. Not worth the three days of recovery that would cost me. I haven’t been out after dark in several years.
And it goes on.
Pain is disabling, even if its invisible. I’m in pain, even if I’m smiling. I’m always in pain. And pain is exhausting. That nerve in my spine is always compressed, and always shooting agonising pain down my leg. My leg is partially paralysed. Walking is excruciatingly painful, and exhausting. You try walking when only one leg has full function. RA pain is always lurking. If I eat I almost always experience terrible upper GI pain and I need to get to a toilet FAST.
Keeping a smile on my face and a positive attitude is a sign of strength, not a sign that my pain has gone.
So when I say “No, I can’t do that.” there’s a good reason. So listen. Believe me. And understand.