The Life-Changing Magic of Being Understood

Chronic illness is hard to explain. It is so foreign to the way most people live their lives and approach their health, that they don’t know how to respond when confronted with someone who is in constant pain and likely will be for the rest of their lives. The normal optimistic clichés don’t quite apply, and “Get well soon” can be more depressing than helpful. There’s a pretty consistent stream of bad news and minor crises, which can be difficult for anyone and everyone involved to work through as quickly as they happen. Unlike the friendly responses to “what helps with sunburn?” on Facebook, medical advice often appears unsolicited, from people with no credentials, in bucket loads and with a hint of blame. After all, if you just got this ingredient from your local grocery store, all your problems would be solved! Why aren’t you better yet? It can feel like a constant battle to explain, over and over again, that your body is regularly trying to self-destruct, no this special green tea won’t cure it all, and trying to explain that strange balance of trying to stay positive and live as much of a life as possible while also being somewhat twisted and sarcastic about your conditions.

That is where the chronic pain buddy comes in.

While that title was originally a sarcastic attempt at stress relief, it has evolved into one of the most endearing terms I use for my best friend. Through treatments and hospital stays and new diagnoses and God knows how many waiting rooms, the last couple of years have been full of medical adventures for both of us. She has endometriosis and PCOS (among other things), I have sciatica and hip instability (among other things), and it has been one hell of a ride.

Life with chronic illness isn’t something any of us signed up for, but its misery is lessened by the presence of a friend who’s been there. One who doesn’t tell you to just eat more vegetables, drink more water, stop being so “negative” by acknowledging that your condition has no cure, eat 1.5lbs of (insert herb/spice/root vegetable/green leafy vegetable) per day, and exercise more and your illness will be magically cured!

On lower pain days, we take turns driving and go on adventures, even if that just looks like drinking coffee and reading books in a place that isn’t either of our homes. Sometimes we’ll pack up a wheelchair for one of us, and go around thrift shops or our favorite stores and act like “normal” people our age with the help of a mobility aid. Sometimes, we just meme-bomb each other from our respective beds.

It’s beautifully refreshing to have a friend that isn’t trying to fix me (you can’t) or convince me my body isn’t that broken (it is). A friend I can cry to when the pain is hard to take, and sarcastically share chronic illness memes with (oh it’s a thing). A friend that focuses less on proving that my body doesn’t limit me, and more on finding ways to have fun while working with in our physical limitations. A friend who can have just as much fun snapping back and forth while watching shows, as going to the pool and actually doing things. A friend who knows that some days, yoga and medications help, but some days, things just suck, and who won’t try to send me articles someone saw on Facebook about someone else’s distant relative being cured of a condition that is kind of vaguely similar to mine.

My personal favorite chronic illness meme

From chiropractors to pharmacies, from hospital days to low pain days, I know I can depend on her because she gets it. She’s right here in the suck-ness with me. She knows the struggle of managing spoons and trying to live a semi-normal life when it seems like every bone in your body is against you. She reminds me on days that I try to overextend myself for the sake of “proving myself” or “being normal” that it’s okay to live within my limits. It’s okay to listen to my body, before I end up passing out or falling down from my efforts. I push her wheelchair when we go out, and we share chronic illness life hacks that keep our worlds turning.

Life with chronic illness is better with another spoonie to handle it with. You know, one who knows the actual maximum amount of ibuprofen you can take without dying and that the words “I can’t” are not an invitation for a challenge. Someone who knows that while your illness touches every part of your life, it isn’t 100% of your life. It is beautiful to be understood, respected, and honored as a person living with chronic illness, and having a best friend that just gets it. No explantations or analogies needed.

Dear non-spoonies: we don’t hate you. We know you mean well. In case no one has formally told you, let me be the first: the helpful internet articles about “cures” that can be found at the grocery store or local gym are not helpful, they may work for a few people here and there but it’s exhausting to see them all the time. Chances are, if you’re seeing it, we’ve already seen it at least a dozen times and tried it twice. Let our doctors be doctors, let yourself be our friend. Please don’t talk about how “everything happens for a reason” or you “just know” we’ll be better in no time. A better response when you don’t know what to say is, “I don’t know what to say, but I’m here and I care about you.” Boom. Simple as that. Let us share what we’re struggling with without accusing us of being negative, tell you our problems without you trying to identify a miracle cure, and ask for help without being shamed for how inconvenient our illness is for you. Trust me, we know it’s no joy ride, we live with it every second of every day. Let us just be humans who love you but have some different life experiences, not a project or a problem. *end rant*

4 thoughts on “The Life-Changing Magic of Being Understood

    1. Thank you! These are from my stash. 🤣 I keep a saved folder on Instagram and a secret board on Pinterest for memes like these, they’re great pick-me-ups on higher pain days. The articles, on the other hand, usually go straight into the recycling or “archived” messages. 🙃

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