Friday, 15 May 2015

21 Things a Spoonie Doesn't Want to Hear

1. But you don't look sick, you look great.
- What exactly does 'sick' look like? I didn't realise I was doing it wrong.
- I left my 'Chronically Disabled' banner at home, sorry.
- You didn't see me throwing up all morning and then crying when I tried to lift my leg so my partner/family member/carer/friend could put my socks on - it's called 'putting on a brave face.'
- That's the power of make up, my friend.

2. What's wrong with your leg?
- Oh, because I'm on crutches without a cast, I must have broken my leg! How many other people do you see out of plaster, using specialised crutches hobbling around?
- Yes, I'm in a wheelchair because my leg hurts, not every joint in my body.

3. You're too young!
- No shit. People can be born disabled, you know?
- There isn't an age limit on disability.

4. Just take some paracetamol.
- I wish it was that easy. Paracetamol do absolutely nothing, unless topped up with various other meds, but still the agony continues. It may dull your headache but they're about as useful as Haribo.

5. You just need a good nights sleep.
- Sleep? Sleep? What is this sleep you speak of?
- Sleeping for a week wouldn't help. Fatigue is a chronic conditions best friend. Some Spoonies can't sleep because of pain and are exhausted after the most mundane task - once you're knackered after washing your hair, then come and tell me to get a good nights sleep.

6. You'll be okay tomorrow.
- If only. I may be feeling a little bit better but I won't be completely cured.
- Don't talk about tomorrow, I'm trying my best to get through today.

7. I'd love to stay home all day, like you.
- Are you kidding? Do you not think I want to participate in society? Do you realise how lonely and isolated I feel?
- It's boring.
- I want to go out and do things.

8. I remember when I fell down the stairs/had the flu/got a splinter.
- It's not the same. Jog on.
- Everyone has experienced pain, but until your life is dominated by it, you can't even begin to compare.

9. If you think positive, things will get better.
- Positivity is a good thing but it's not a cure. There is no cure, and if it was that easy, we'd all be doing it, trust me.

10. Don't you rattle with all the drugs you take?
- No, and if I didn't take them I wouldn't be able to function.
- You do realise that they dissolve?
- Do you think I want to be reliant on pills?

11. Have you tried...?
- Anything you suggest, I can guarantee you that I've tried it. Twice. If there was something that would help, I'd be doing it.

12. You need to get out more.
- I know. I can't. It hurts. I'm sorry.

13. Why are you parking in a disabled bay?
- Because I have a Blue Badge.
- You can't always see disability, so don't assume.
- I promise you, I wouldn't be parking here if I didn't have to.

14. You haven't really got anything you can look forward to, have you?
- Yes, I still have a life, it's just a little bit more challenging and I need to plan things down to the minute.

15. I feel really sorry for you.
- Sympathy is my worst enemy. I'm not a victim.
- Understand, don't pity.

16. You're lucky, you can nap whenever you like.
- And it ruins plans.
- It makes me grumpy.
- I can't function at all if I don't nap, I have no control over it.

17. You're such an inspiration.
- As nice as this is, I haven't done anything inspiring, this is my 'normal'.
- I'm making the best out of a shitty situation, I'm not a hero.

18. Losing weight will do you the world of good.
- It won't change anything.
- I was skinny when the pain started.
- It's difficult to exercise when moving hurts.

19. You probably just need some anti-depressants.
- On them, not cured. Still in pain.
- They're to help with a completely different condition.

20. It's all in your head.
- Yes, I do have mental health problems. No, I'm not making the pain up.
- It's a recognised condition - this chronic-pain-thing.

21. There's people worse off than you.
- I'm fully aware of that and I appreciate that everyone is suffering in some way or another but I'm not comparing myself to anybody else, you are.
- And there's people better than you.

I have Ehlers-Danlos Syndrome Type III, Fibromyalgia, Postural Tachycardia Syndrome (PoTS), Kyphosis, Depression and Anxiety (to name a few).

I've heard all these lines and probably more. I realise some of my answers aren't very diplomatic and may come across aggressively but it's because the comments annoy me. I mean, wouldn't you be slightly irritated if you were in agony and somebody told you they felt sorry for you? I don't waste my spoons on answering these questions anymore, they're reserved for much more important brushing my hair.

Have you had any comments/questions asked about your disability that annoyed/upset you?

Sarah x


  1. I know how you feel, people can be very ignorant! But, I've learned that although it's hurtful, they usually mean well and are genuinely trying to help.


    1. Of course, some of the questions/comments are people trying to offer helpful advice but it can be very laborious. I'm always polite in my response lol, this was just a rant :) thanks for taking the time to read x

  2. I love this Sarah! Particularly points, 1,4,5,8,9,11,12,17...basically everything I relate too in great amounts. I don't like the illness dictators of this world, I know they are only trying to help and be positive for us, but it seems very ironic when they usually live life at 100 miles an hour and have probably never encountered more than the flu. Slightly irritating to hear but hopefully we can learn to become immune to those comments. Xxx

    1. Thanks, Nancy, glad you liked it. Exactly, they may be coming from a helpful place but when you've heard it so many times it gets very annoying. I just smile and nod now lol x

  3. I must admit that I couldn't begin to understand what you must go through, but I can relate to anxiety and depression. I think people can be insensitive to things they haven't experienced or don't understand. I'm sorry you have a hard time, but don't let people get to you, we are so much more than our physical bodies :) x

    ♥.•*¨ AmandaSays ¨*•.♥

    1. Thanks so much for your comment, Amanda. I try not to let it get to me anymore :)

  4. YES, all of these. Also "wow your life sucks" "'I'd hate to have your life" yeah I know it all sucks but I can still have a good time and do actually enjoy living. And the "youre too pretty to be in a wheelchair" I know I look fabulous but the two are not connected in anyway
    Beth x
    Mermaid in Disguise

    1. Exactly, well said. This is our 'normal', it may seem rubbish to others and yes, it is shit at times but no point dwelling on something you can't change. Let's just be fabulous.
      Wow, I've not heard that one before! The two aren't remotely connected but at least they stated the obvious about your gorgeousness ;) x


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