It’s hard enough being a 28 year old disabled woman without the insensitive comments of abled people, but factor in the dickheads of society and their ludicrous questioning, things can get very awkward, very quickly.
I don’t deal well with comments regarding my health. To this day, there are certain people that say extremely negative and hurtful things that really affect me. I wish I was strong enough to let words slide off my back but when it’s an attack on something I have absolutely no control over, it really hurts. Being in pain day-in-day-out and told you’re not good enough, you’re a scrounger or ‘putting it on’ is worse than the pain itself. It eats away at you and breaks you down even further.
I want to be better but I’ve accepted that my chronic illnesses are a huge part of my life. All I ask for is empathy; don’t tell me I’m a failure or feel sorry for me, I’m an intelligent woman and don’t want to be patronised. Talk to me about things other than my health, don’t walk on eggshells, if I don’t feel great, I will tell you. Don’t be afraid to ask questions either, I’ll gladly respond, I’ll tell you why today I’m in a wheelchair and yesterday I used crutches, but don’t judge me for that. My health is a roller-coaster, I have no idea if I’ll wake up feeling okay or wake up and not be able to get out of bed. And, yes, I am managing things better now, I’ve learnt some amazing new techniques but it doesn’t mean I’m ‘better’.
If it was possible for me to be cured, don’t you think I’d have done that already? Nobody in their right mind would want to be in chronic pain. I want you to understand that it’s okay to talk to me about my conditions, it’s okay to ask if I need any help, but it’s not okay to belittle me or make me feel worthless.
My body hurts enough, don’t make me cry because of your words.
Confrontation gives me anxiety, I hate the thought of broaching a difficult topic that I know will cause conflict. If a stranger makes a rude comment or gives a snide look, I tend to ignore it but if a friend/family member says anything, I stand up for myself, usually to my own detriment as I get very emotional. An attack on my health is too personal and I can’t let it drop.
I rely on crutches, a wheelchair, splints and braces now, so my illness is not invisible any more but some days I don’t need any of them – don’t condemn my good days, praise them, they don’t happen often.
You have to be an incredibly strong person to live with chronic pain and I salute all my fellow Spoonies and thank them for the constant support, love and empathy.