Disability isn't always inspiring, in reality it's this. 80% of the time. For me anyway.
This clip wasn’t really planned. Somehow found the courage, half delirious, to impromptu share this snippet. I do have plans for a whole video series here about my health issues & helpful tips I’ve discovered, but I’m not financially stable enough to make that content, but soon!
I had just shared this video on my Instagram story, late last week & I couldn't believe the response I got. Sometimes social media can feel akin to screaming your deepest insecurities into a void & sometimes connecting with one or two people. But within a few hours of my post I had hundreds of messages between comments & DMs. Ironically I didn't have the energy to reply for obvious reasons but just know that it meant so much to me, every single one. I read some out loud to my mum & I didn't even get half way through the first message before we were both crying I will be coming back to these message often, when I need a pick me up, here's the post:
So to my fellow spoonies, bcs there are so many more of you following me than I had any idea of:
- THERE IS NO RIGHT WAY TO BE BROKEN/SICK. 1st prioritize healthy mental habits over how you think you should behave, Esp if it's so you don't make other people uncomfortable. & count the freaking wins, go overboard, congratulate yourself for getting out of bed (or for resting when needed if you stayed in). You're very not alone, your pain (mental or physical) is valid/real, & I believe you. There's a massive online disabled community I'm only just discovering, use hashtags! It’s easy baby step to finding more like minded people.
- DO NOT compare yourself to people even if they're disabled, everyone's ability has zero todo with yours.
- & finally whether you see this as a burden, a battle, a non-consensual life buddy whatever, it's never black & white. If you give up for a second it's not all over. You can "give up" struggle for a time day & that doesn't mean you're giving up forever, even if you lose 'ground or progress you fought tooth & nail for, & it feels like everything was a waste-you're ever going backwards bcs you're still here today & today is forwards from yesterday
For my healthy peoples:
I wish I had the self care skills I have now, when I was a bit healthier (always been a spoonie, haven't always been disabled). The torture I put myself through, pretty much needlessly, is nuts. I thought if I wasn't constantly pushing for 300% I might fail at something... Majority of my degree was a nightmare. For fucksake guys it's okay to take a break, it's okay to say no, you don't have to prove yourself or do anything to make other people comfortable. Everyone is responsible for their reactions to situations in their life, it's not anyone else's issue.
* Giving encouragement to chronically disabled/ill individuals: there’s lots on YouTube with what to/not say to disabled folk (eg https://www.youtube.com/watch?v=7bg-Nq7_zFI ) but for me the main things are:
- listening with empathy, not sympathy
- be kind
- be up front,
- & if in doubt just ask 'is this okay to say’ etc.
No one likes to be a pity case, but you also don't have to beat around the bush. Responding “wow that sounds awful” after a massive word vomit is plenty fine, I'm not expecting a solution. Just treat me like a human, don't suggest a cure, & believe me.
Also wording is important: Eg someone means well and says: "get better soon!" but it's not a well wish for us bcs there isn't any getting better (imagine wishing someone with MS, or cancer that they get better soon, extreme example but still helpful), sometimes it feels like a blame on us for not trying harder to get better
Vs "hope you feel better soon" is a much better option, subtle word change makes a huge difference. It doesn't place any blame & reminds of the transitory nature of a chronic illness...
The worst of my pain isn't constant, most chronic illnesses have waveish patterns. Flares, or periods of worsened symptoms (brought on by something eg food or activity), & then a return to what that persons baseline is. A flare could be a day a month who knows, but they ALWAYS GO AWAY EVENTUALLY!
So that's an easy way to help me when I'm in a flare, is reminding me that as much as this sucks & feels like l can never do anything again, they eventually pass.
as long as you mean well & you’re not asking me things like five seconds of Google can tell you, we good
PS it’s a fairly known faux pas (and tbh pretty Insulting) to try & suggest a cure or treatment randomly to someone with a chronic illness or disability, or say things like “must be nice to stay home all day”
No yes I puke from pain on a weekly basis, am almost 30 but can't live alone, had to give up 95% of my passions & joy sources, & have an expensive degree I worked my ass off for gathering dust (next to 40k student debt) JUST FOR FUNSIES /allthesarcasmintheworld