Kim isn’t alone in this sentiment. It was echoed by another EDS sufferer, Emma*, who said the same, adding, “If someone can’t be bothered to see a simple chore through, it’s like they’re saying they not bothered about you. Another thing I can’t stand is when a person helps as long as they can pick and choose what they do. Rather than what I need them to do.”
Understandably, some of the ways disabled bodies need to live mean little idiosyncrasies exist because of pain. If it hurts you to bend down, it’s a significant aid if things are picked up off the floor for you, even though your friend would rather not deal with your kids’ dirty underwear heaped in front of the washing machine! It’s not always the obvious that needs attending to. A wouldbe helper may see the stack of grot in the sink and reach for the rubber gloves, but you may find it easier to wash-up than to load the laundry, because…Yes!...Your body can’t do bending over, remember?
For many reasons, it’s not always easy for disabled people to ask for help. Unexpectedly perhaps, criticism is one such reason Kim is reluctant to reach out – even to official channels, when she really need to. “Social Services staff were assessing me in my own home. They knew nothing about my degenerative illnesses. I was told by one ‘Carer’ that I had to do more and they had people worse off than me. I guess she saw me standing when she came in the evening and didn’t realise I’d been in bed all day, only getting up when my son came home from school, and then going back to bed when he did. I was told I’m too young to need them. I cancelled the assessment and went without the help I need.”
Not everyone needs Social Services to help with care, when friends and family could easily lend a hand here and there. If you’re going to help someone less able than you, make sure you’re open to doing things you don’t really want to do! If you’re not, you’re only doing it to make yourself feel good, and not to genuinely, altruistically help another human.
Instead of announcing the task you’re going to tackle, ask a straight forward question – “What can I do to help, that you can’t do today?”
You may well be met with resistance, so just repeat it one more time. Just don’t push it. Doing something for another feels great, and we should all try to do whatever we can for those in need. Just don’t lose touch with the facts that it’s best not to guess or assume, or to expect those in need to ask for help.