You MUST try …..
…. enter any number of weird and whacky suggestions after this phrase.
Chances are that one magic thing you or your Aunt Zelda tried for your bunions is not going to cure their multiple sclerosis.
You may have something valuable to share that they haven’t tried. But first just pause for a moment and think of the young mum with a child with noticeable severe eczema. Imagine her life in lifts, supermarkets, and streets. She has been approached so often on this topic she has learnt to say “thanks so much, that is super helpful, I’ll try that”.
It’s quicker than stopping to explain the 58 creams have been tried, 7 specialists, 5 Naturopaths and even 3 total quaks (just in case like) she has tried.
If you think your bunion cream is still worth a crack, go gently forward.
You’re so unreliable!
Guess what – ill people like standing you up, even less than you like to be stood up. At least you can go do something else, they are probably cuddling their toilet or hot water bottle, or in a que in the Emergency Room waiting for pain medication. Where their statistical odds of being treated as a drug seeker are high.
Just snap out of it!
This one doesn’t really need an explanation … just don’t do it.
Your health is ruining my life too you know.
Actually, this is something you will need to find a space to say if it is true. This one is more about how and when to say it. Tip: Never in anger. Another Tip – consider some kind of support network for loved ones of the chronically ill. That will be a safe place for you to first vent about the impact on your life. It may help you work through a way to broach your concerns with them that doesn’t make them feel even more rubbish.
It’s all in your head.
This one can be uber subtle, as few would bravely come out and say “it’s all in your head you nutter”. Although most of us spoonies (people with chronic illness) have had the ‘pleasure’ of meeting those brave few.
There are other subtle ways to get this across that will still successfully knock their self-esteem. Heres some I have had
“I cured my chronic knee pain after I learnt not to ‘buy-in to knee pain’: maybe you should give it a try”
“You really need to get your stress under control”.
Can we talk about something else?
Some days no we can’t. Some days our lives don’t actually have anything else. Try and imagine that for just a few minutes. If you still want to ask the question after that, may God be with you.
What are your plans for Christmas?
Most spoonies can’t make plans for tomorrow morning, next Christmas is terrifying.
But you look awesome
Actually this one is often seen as a ‘no go’ tip. So maybe go carefully. I personally am happy to be told I look good (who isn’t on the wrong side of 40?). I am working on a ‘look good, feel better thing’ at the minute … where sometimes I make an extra effort. Looking normal sort of helps me feel normal sometimes.
You are still sick – really?
Yes incurable chronic illness, are often, well incurable.
This one is the unique challenge of the invisibly ill. Anyone can see it would be mad to say to an amputee “really, you STILL don’t have legs?” What is less clear is – for someone with invisible, chronic, incurable illnesses – this question is just as about as nonsensical.
Get Well Soon
Maybe I am being a bit fussy here. For me this one always feels like …. oh poor you, head cold, sucks, rest up … see you out and about again soon.
My current reality is any given day comes with about a 60/40 chance of not being well enough to leave the house. The idea of “get better soon” seems so inaccessible, so unhelpful, and really kinda painful.
I am a bit stuck on what to advise you to say here. Something we spoonies do for other spoonies is to is wish them a pain-free day or hour etc. This one day at a time approach is often a useful survival technique. Alternatively rewording your ‘get well soon’ it to “I hope things improve” or “you find some improvement” or “you get some relief”…. is more helpful.
I realise it seems a lot like ‘get well soon’. However that phrase has a normal use … the normal use is a well person temporarily ill, in bed or in hospital – soon to be up and about and ‘normal’.
So “get well soon” for me usually works to remind me how that is so NOT going to happen.
Do – Talk to them
You might be forgiven for asking – what on earth do I say to them?
This is not so clear, each spoonie is different. Visible and invisible illnesses are different. So do talk to the spoonie in your life, ask them what you say (and do) that is helpful and unhelpful.
It’s hard for us to let you know when you are doing things that make it worse. If your spoonie shared this somewhere you saw it – they might just want you to get that dialogue rolling.
Yours as Ever,
Dr Rach x