I Don’t Want Your Spoons: How to Filter Outside Advice for Chronic Illness and Pain (OPINION)

Have you heard of the spoon theory?
My friend sells this supplement; your body needs more of X.
A cousin of mine got a dog and things got so much better.
You need to relax more.
I always start the day with an inspirational quote.
Don’t eat that! Eat this! A study showed it causes flare-ups.
Go to the gym more, or do something different.
Smoke pot and get off that pharma.
Get an Rx for something stronger.
Can’t you get extra therapy sessions?
You need intimacy/sex.
That’s not a real thing/you’re faking.

You need to cry.

Mindfulness will put you in touch with a higher power.
You sure it’s not in your head?
Try new things! You never know what’ll interest you!

The Doctor is in.

I could go on and on and on, and I bet you reading this now who experiences any sort of chronic illness could make this list go on forever. Oh, yes, like the Doctor above, I wish I had a big enough ovary to tell some people something a bit stronger than shut up.

What makes things even more difficult is what I struggle with is invisible. The only time I’m 100% believed is when I’m lying in a hospital bed with a visible wound.

It all became loud noise, and overwhelming amounts of information that I ended up drowning myself with night after night. It all comes down to one single principle to follow: healthy boundaries. I still struggle with this topic, but here’s what I’ve been doing to protect myself while not hurting the person who, I would hope deep down, wants to help.

Fellow sufferers: do your best to only help when asked. To be honest, that’s where the idea for this came to light. I was participating in a few group therapies, and there was such peer pressure to do things exactly as the others. One size ideas don’t fit everyone. Telling me I need to abide by The Spoon Theory or I’ll never improve my pain, if I didn’t do mindfulness in one particular way, I’m doomed to the clutches of my cPTSD, or oversharing about gluten being my mortal enemy is the worst. Sometimes it’s not that intense. You mention you’ve started something out of the blue, and to show solidarity, they share what’s been helping them instead of asking you more questions on how you’re coping. I’m guilty of it too: I need to learn to listen, not find a solution.

Thank you for letting me know about these techniques, I’m glad to know there’s choices.
Hey, thanks for sharing, but I think I just need to get this off my chest.

Medical professionals get it wrong. Do your best to get to know the background of the person. I think it very important to flat-out ask anyone treating you where there strengths and weaknesses lie. I hate hearing oh, yeah, I’ve heard about that: to me, it means they probably only know generalities, if that. Take what they say with a grain of salt on the topic, and if you need more help, request for names of people who specialize. Majority won’t take offense, if they do, they’re in the wrong profession. If they’re only selectively listening to your concerns, selectively listen to their suggestions.

It seems this isn’t your strong point, could we look into adding x into my treatment plan?
I’ve having some trouble with X, do you have some names I can call?

Stop trying to profit off my illness! This one I can’t stand. I’ve had a few people offer to help, but it turned out they were trying to sell me some sort of supplement regime, some sort of new 90-day fix that includes exercise, or a pyramid scheme type therapy. If someone who you don’t usually talk to suddenly takes interested in your problems, have healthy skepticism about what they’re offering.  98% of the time, it’s bullshit.

Thanks for thinking of me. That’s not a good fit. Good luck with the grind!

You don’t have to listen at all, you don’t have to respond and you don’t need to explain. Silence is always a viable option, and having to explain yourself over and over is quite draining. If they ask you to pipe up, one of my favorite responses is “Sorry, that’s above my pay grade”. I don’t clarify, I don’t elaborate, that’s all you get.

Sorry, above my pay grade.

I realize this all is ironic, but that’s the goal. Take what you need that works for you and leave the rest: you’ve just created a healthy boundary. Over time, it gets easier to find your missing puzzle pieces. Keep practicing.

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