Spoonies would like you to know these 10 things…

Spoonies very often rely on help from family and friends who don’t live with a chronic illness.  For many of us this help makes a massive difference to our lives – driving us places, cooking us meals, helping us with tasks, recognising when we need medical help.  I know that without the support of both my parents – but especially my long suffering Dad (the only person in our house without a disability) – I would have had to give up work, wouldn’t be able to socialize regularly and would probably live off Super Noodles and dairy free yogurts.  Assuming I could afford to buy them.  And that’s not even thinking about the help you get from strangers – the man who gives up his seat on the bus for you or the woman who helps you pick up your change when you accidentally tip it out of your cardigan pocket for the third time that day (only me?  OK then).

But, there is also a list equally as long of things that people do that are so not helpful.  For every lovely person that helps you get something from the top shelf of the supermarket there’s a bellend who pushes past you in the queue at Starbucks.  At least if someone is a dick intentionally it’s easy to handle.  Worse are the things people do that they think help but are actually patronising at best and damaging at worst.  So if you know a spoonie or just want to know what’s helpful when you do meet one, read on.

1 – DON’T walk on the side we use our walking aid on.  If we only use one (lucky us) then please walk on the other side.  We don’t have to worry about hitting you in the leg, you don’t have to worry about kicking it out from under us.  If we use two or a chair and you’re not sure where’s best, just ask us – chances are the answers not behind us or moving from side to side like a demented puppy.  We want to be able to keep up with you and hear you as well, but we all have different capabilities so don’t assume you know where’s best.

2 – DO ask us if we’re alright ONCE.  We appreciate your concern and it’s nice to know that you’re thinking about how we are coping but we don’t need you to ask every five minutes we’re with you.  We’re grown ups, if our alright-ness changes we are capable of letting you know.

3 – DON’T tell us to have faith in God’s plan.  We either already do – which is great – and use it as source of comfort without you telling us to or we don’t believe in God and we find it insulting.  So just, don’t.  (However, telling us you will pray for us yourself is nice whether we believe in it or not, I for one always appreciate it.)

4 – DON’T try to rearrange your whole life for us, but DO try to include us.  OK so we can’t go swinging through the trees at Go Ape, but that doesn’t mean you shouldn’t!  Tell us what you want to do, acknowledge we might not be able to do it and see if there’s a middle ground.  Can we come along to watch you and laugh take photos?  Can we do something before or after we can join you for?  Can you do that with your other friends and then we have some one on one time?

5 – DON’T tell us what your friend/auntie/dog who has our condition can do.  This isn’t a one disability fits all kinda gig, you know?  Either they can do more than us, so we feel like shit.  Or they can do less than us, so we feel like shit.  Keep your trap shut.

6 – DON’T compare your acute problem to our chronic one.  A broken ankle isn’t the same as a permanent disability.  A single headache isn’t the same as a migraine disorder.  That’s like saying you sang karaoke once so you’re exactly like Mariah Carey.  Like saying you got locked out your house for an hour once so you know what it’s like to be homeless.

7- DO offer alternatives if we cancel on plans.  For example, if we’re supposed to be going for lunch and we say we can’t, why not offer to grab a takeaway and come over?  If we can’t make it to the movies, why don’t we stay in and watch DVD’s under a duvet?  But DON’T push – if we say we’re not up for any of it, then we’re not up for it.

8 – DO offer to help us if you see us struggling when we’re out and about, but DON’T just start helping without asking.  How would you feel if you were shopping and a stranger just came up and started carrying the bags for you without warning?  Or if you were trying to choose something off the menu and the waiter started yelling the different dishes in your ear?  Ask us what we need, don’t assume.

9 – DON’T tell us it could be worse.  We know it could.  Chances are in a few weeks/months/years it will be.  Just really…why would you say that?

10 – DO stand by us when we’re being grumpy or unreasonable.  Everybody knows that when you’re tired and/or in pain you find it harder to control your emotions – imagine how hard it would be if you had been tired and in pain for years.  We will get upset about our limitations and take it out on you and we’re sorry.  We will be tired and take it out on you and we’re sorry.  Give us some time to cool off and we will kiss and make up, we swear.  (NOTE:  Spoonies are, like everyone else, capable of being abusers and this is not OK.  If your friend/partner/family member is violent, controlling or behaves unreasonably without recognising it, apologising for it and fixing it then do speak up, do seek help and do ditch their worthless asses.)

Is there anything else you wished non-spoonies would know about how to help?  Or do you have any examples of people doing this stuff you want to share?  Drop a comment and join the conversation!

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15 thoughts on “Spoonies would like you to know these 10 things…

  1. Couldn’t agree more. Really a great list for anyone who loves/ cares for someone with a chronic illness. #6 is an excellent comparison, I’m going to have to remember that one!

    Liked by 1 person

    1. It’s one of the things I hear at work a lot – ‘ugh I know how you feel, I’ve had a headache all day!’ – yeah well you may have had a headache for 13 hours but I’ve had one for 13 years so don’t think you really do know how I feel!

      Liked by 1 person

  2. I relate so well to all of this…I particularly hate when people tell me, “my auntie so-and-so has the same problem” then describes something different entirely. I would have to add in there please don’t pray for me either…I can not abide when someone says that. great post, really needed.

    Like

    1. Oh but didn’t you know every disability is the same and effects everybody the same? No I didn’t either, but somebody I met once saw a guy on youtube who climbed everest with one leg, so surely we can the same, right? (that’s always a favourite of mine – comparing a loss of limb to having pain in every limb, like they’re not even related!)

      Liked by 1 person

  3. Excellent post 🙂
    No 6 is one that seems to come up a lot when you live with Chronic / Daily Migraine. I just can’t keep my face in a pleasant expression when someone does the ‘oh I know, I’ve had a headache all day’ thing. If there’s one advantage to the fact that I barely make it out of the house once a week, it’s that there are fewer opportunities for random people to trigger my Spoonie rage with such comments 😉

    Liked by 1 person

    1. It’s the changing that’s the worst part isn’t it? If our conditions would just pick their symptoms and stick at em rather than every now and then throwing up a new one life would be so much simpler!

      Liked by 1 person

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