How we give a damn when no else will

And why it’s ultimately up to each of us to save ourselves.

Credit: Andrew Neel on Unsplash

Jess: There’s this ongoing thing I’ve been parsing through in therapy, where I really struggle with showing up for myself and my own health, especially when it feels like the people in my life aren’t taking it seriously. I start to feel like, “What’s the point of me caring so much when no one else does?!” and then it all falls apart. How do y’all navigate this?

Kat: Something I’ve tried really hard to work on — mostly because if I didn’t my mental health would be in the toilet 24/7 — is that I, in a lot of ways, need to stop waiting for others to care, because they usually disappoint me in the end. And it’s not so much about giving other people a pass as much as it is about saving myself the inner turmoil when they let me down. Because it will inevitably happen if my prior experience has anything to say about it.

Ash: In ye olde early days of my chronic illness, I would constantly push through whatever I was feeling so I could attempt to keep up the way I had been able to previously. All it led to was resentment of myself and of those who didn’t notice my needs, especially once I started to communicate them. It became a survival tool to remove myself from those environments and relationships in order to even be OK with myself. 

Skyler: Wow, it sounds like Jess and I are having similar conversations during our therapy sessions! I think I spent so long ignoring my health needs — I’m still in a great deal of denial, if we’re being completely honest — that it’s now second nature to play down my symptoms or laugh them off. I have a history of not wanting to make others uncomfortable or be the dreaded b-word (a burden), but these inclinations have done nothing but bite me in the ass. I feel like I’ve spent so long using my pain as fodder for jokes and not showing up for my own health that I’ve set a harmful precedent for those around me to follow.

Jess: Well, on the one hand, yay! I’m not alone! And on the other… dammit, it’s not just me. I try so hard to be understanding and remember my loved ones also have things going on, and I don’t expect them to keep up with all the things. And/also, sometimes I want to scream because is it really that difficult to, at minimum, remember that I’m disabled? (Also, we’re five years into a pandemic, can they at least remember I need them to mask?!) I’m always happy to discuss accommodations and needs, but most of the time it seems like I’m just expected to keep over-functioning into burnout so no one else needs to bother. I hate feeling like a squeaky wheel. 

Ash: I hate feeling perceived which feels like a necessity when you need to ask for accommodations. I’m dealing with a lot of that since my diagnosis of celiac — I don’t want to inconvenience folks by changing what people buy or make but I also don’t want to be unable to eat any of the food where I’m going. But people seem to understand and accept celiac whereas they don’t seem to understand or accept fatigue, sensory overstimulation, or anxiety. It’s almost as if there’s a ranking for what’s valid or important as it affects others as opposed to how it affects me.

Kat: It’s almost like a moral hierarchy of what makes a person comfortable? Like of course you wouldn’t make me stand out in the midwestern tundra when I have the flu, but it’s too hard to believe that going to a sports stadium when I live with chronic migraine is me being difficult? Cool. Taking notes. 

Jess: Y’all really do get me. I guess it’s kind of like, it’s easier for people to remember when it’s something acute — like the flu — or something people are familiar with — like celiac? I often end up feeling like I’m just doing a horrible job communicating, when really, it’s probably just that the entire world is overwhelmed right now and maybe I need to be more OK with being that squeaky wheel? (And being perceived, whoa Ash! 🤯)

Skyler: I think this also goes into the issue with people not understanding that chronic illnesses are exactly that — chronic. It can be hard to explain to someone that while yes, I am in treatment for various conditions, no, I won’t be cured of anything. Throw in a rare disease (or several) and trying to explain why I can’t eat a certain food or why I may do things that come across as rude for the sake of my health becomes exponentially more difficult. There are unfortunately people who either don’t want to take the time to learn about what’s going on with our health or just straight up don’t care and have no interest in supporting us, which makes trying to care for our own health unappealing and that much more difficult.

Kat: Well, that’s what spoonie friends are for! In meeting you all, I’ve learned how powerful community care is when you live with a health condition. Believing someone at face value, trusting that they’re doing the right thing for them. I try to live my life with those intentions, and am just hoping others catch on. (Any day now…)

Jess: My phone background says, “Nobody is coming to save you. Get up.” I put it there after I got incredibly sick a few months ago, and felt really dropped by loved ones, and since then, I’ve noticed how relevant it is to all sorts of situations. At the end of the day, it’s my job to take care of myself — even when it hurts that I feel like I’m doing it alone. And/also, it’s OK to have expectations of care. As much as the popular narrative is that we don’t owe each other anything, I disagree. I think we all owe each other — and ourselves — a whole helluva lot. 

Skyler: It's just dawning on me now that the wise words of the Lorax can apply to a broad array of situations, including showing up for our health: "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." Maybe this quotation should become my phone wallpaper, à la Jess? Our conversation has inspired me to take these words to heart and try to remember that I can show myself empathy and grace even when others don’t.

Ash: Often I have to remind myself that my life is exactly that: mine. That reminder is not a selfish thought but simply a fact (though it sure can feel that way if you have people-pleasing tendencies). While I hope I can surround myself with folks who can support me in it, I have to build a life that gives me the best chance of living and truly feeling alive, not just existing.

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