Last week I wrote about What to Say to Someone Who is Grieving. Not only have I had a lot of experience with the grieving process, I’ve also had a lot of experience with chronic pain and illness. If it sounds like my life has been one big joyride, fear not, there have been good times too, many good times.
Having lived with chronic pain and illness for over 20 years now, I think I’ve pretty much heard it all. Some people’s comment have been helpful and supportive, while others’ unhelpful, insulting, and downright hurtful.
I’m pretty sure that people don’t want to hurt, frustrate or anger me with their words, it’s just that they don’t know what to say. I mean what DO you say to someone who is always struggling with their health, who doesn’t get better?
The first instinct is usually to help, which often leads to platitudes, clichés, and remarks such as these (in other words, don't say this):
At least it’s not fatal.
You need to be more positive.
If you tell yourself you’re not going to get better, you’re not going to.
You don’t look sick.
There are so many other people worse off than you are.
You’re too young to be sick.
I get really tired too sometimes.
You need to eat more protein.
It must be nice not to have to go to work everyday.
You need to get more exercise.
Just push through it.
You’re going to get better, I just know it.
Have you tried…..
It’s all in your head.
You’re just stressed/depressed/anxious.
At least you look good.
You should get out more.
You need to get off all of those medications, they’re what’s the problem.
To the average person, these comments may seem pretty inoffensive and some of them downright helpful. But until you’ve had the experience of living with a chronic health condition it can be really hard to understand why such remarks can be upsetting, frustrating, and irritating.
So what can you say to someone living with chronic pain and/or illness (otherwise known as a “spoonie”)?
Here are a few ideas that are guaranteed to be much better received by spoonies than the previous comments (do say this):
I know how hard you are trying.
Thank you for using your energy to spend time with me, I know how difficult this was for you.
Don’t feel bad if you have to cancel plans at the last minute, I understand.
This isn’t your fault.
I wish I knew what to say.
I care about you and I’m here for you.
Can I come over and hang out?
I hope your symptoms get better.
I just wanted to check in with you.
I’m going to the grocery store, is there anything I can pick up for you?
Please don’t apologize.
This really sucks.
What errands can I help you with?
I have so much respect for you. I can’t imagine what you go through every day.
You look good today, but how are you really feeling?
I hope you’re as well as possible.
I also recommend:
If you’re reading this and you’re healthy, I hope you will never have firsthand experience of what it’s like to be a spoonie. Not walking in our shoes does make it hard to understand what we’re going through, so hopefully these tips have helped. Just remember, when you can’t think of what to say, it’s OK to say just that: “I don’t know what to say.” When it comes right down to it, it’s not about saying the perfect thing, it’s about showing you care.
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