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.


15 Comments

  1. Reply

    Ergh, I know this feeling so well! From the people in the street who tell you to try such and such a thing because their aunt once had a rash and it worked for that, to the people who get annoyed with you for walking slowly or not being able to pay at a til faster because your hands won't open the purse any quicker. I think our biggest issue is that people only see the good days, there are so few people in my life that see me looking grey and in pain with a bp of 45. It's hard to stay positive at times but I always try to think of the people who have been kind and the ones who do understand. I try to think that if someone has a problem with my condition and disability it's their damn issue and not mine.
    Sending you hugs, love and spoons! x x x

    Alice in Beautyland

  2. Reply

    Ergh, I know this feeling so well! From the people in the street who tell you to try such and such a thing because their aunt once had a rash and it worked for that, to the people who get annoyed with you for walking slowly or not being able to pay at a til faster because your hands won't open the purse any quicker. I think our biggest issue is that people only see the good days, there are so few people in my life that see me looking grey and in pain with a bp of 45. It's hard to stay positive at times but I always try to think of the people who have been kind and the ones who do understand. I try to think that if someone has a problem with my condition and disability it's their damn issue and not mine.
    Sending you hugs, love and spoons! x x x

    Alice in Beautyland

  3. Reply

    I agree, they only see us when we actually feel well enough to leave the house. Thanks for reading, I really appreciate it x

  4. Reply

    I agree, they only see us when we actually feel well enough to leave the house. Thanks for reading, I really appreciate it x

  5. Reply

    YES THIS POST. Constantly being questioned about whether I do in fact need a wheelchair all the time and if I'm actually that bad makes me feel like a fraud. If I didnt need to use it I wouldnt. Its not exactly fun. Also I know we're young and look fantabulous but our bodies still suck. Its not our fault we are so damn gorgeous.
    I'll come and confront any assholes for you. Got your back
    Love you <3
    Beth x
    Mermaid in Disguise

  6. Reply

    YES THIS POST. Constantly being questioned about whether I do in fact need a wheelchair all the time and if I'm actually that bad makes me feel like a fraud. If I didnt need to use it I wouldnt. Its not exactly fun. Also I know we're young and look fantabulous but our bodies still suck. Its not our fault we are so damn gorgeous.
    I'll come and confront any assholes for you. Got your back
    Love you <3
    Beth x
    Mermaid in Disguise

  7. Reply

    Love you too, my darling. Thank you, you're such a sweetheart. Exactly, we can be fabulous and disabled, no need for shitty, hurtful comments x

  8. Reply

    Love you too, my darling. Thank you, you're such a sweetheart. Exactly, we can be fabulous and disabled, no need for shitty, hurtful comments x

  9. Reply

    Although I don't know what it's like to be in chronic pain, I have to say this post touched me. Mainly because I could read it from a point of view as me having mental health issues. You're incredible Sarah, so glad I found you through blogging xx

  10. Reply

    Although I don't know what it's like to be in chronic pain, I have to say this post touched me. Mainly because I could read it from a point of view as me having mental health issues. You're incredible Sarah, so glad I found you through blogging xx

  11. Anonymous

    Reply

    Beautifully put Sarah, bizarrely considering my poor health one of my biggest anxiety issues is people judging me as lazy or being a 'scrounger'. I would love to be able to work again, I miss the challenge and the interaction. Being ill and living alone can be very isolating. I try to ignore looks from strangers, I genuinely don't care what they think, but I worry casual friends and acquaintances would think poorly of me.

  12. Reply

    Exactly, I'd love to take part in society too, it's very difficult. I'm getting over the looks from strangers but family and friends hurts. Huge hugs, thanks for reading x

  13. Reply

    Exactly, I'd love to take part in society too, it's very difficult. I'm getting over the looks from strangers but family and friends hurts. Huge hugs, thanks for reading x

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