Part one is here, and is a discussion of the 3 things I really want to communicate to student’s when I give talks about what it’s like to be a chronic pain patient and an artist/scientist.
It’s really important - particularly for pharmacy/biomed/med sci students I meet - to develop empathy & understanding for pain patients, and to critically examine their own biases. If you haven’t experienced chronic pain yourself, it can be hard to appreciate what chronic pain is like day-in day-out, and the medical profession can be rife with misunderstanding and poor quality of care for us. It’s a tiring thing to give talks and write stuff, but… In some microscopically small way I hope it could help improve the care patients like me receive in future.
Part 2: links to find out more about chronic pain life experiences
Disclaimer; please be aware that I do not speak for everyone with chronic pain. I am not some kinda official spokes-spoonie. I’m one person sharing my experience. Some of it I know I share with other people in my chronic illness/disability community… but I don’t talk for anyone else.
I’ve collected some useful links, hashtags, and other stuff here, but it’s just a smattering. This very much NOT exhaustive list might give non-chronic pain/non-spoonie/non-disabled people some pointers to find out a bit more about chronic life, but it’s not a substitute for patient-focused study. That said, here we go…
WTF is all this chat about spoons?
The wikipedia page on spoon theory is helpful
The original Spoon Theory by Christine Miserandino explains in more detail
If you’re not a spoonie, I’d recommend having a look at these #’s on social media to get an idea of people’s experiences (but pls don’t wade in to @/ablesplain us if you’re not); #Spoonie #Spoonies #SpoonieProblems #ChronicLife
Recently #theHomeBodiesCollective hashtag started (video about that here) for people who are sometimes/all-times home bodies because of disability, chronic illness, or chronic pain & it’s an instant fav for me
Additionally, #DoctorsAreDickheads recently trended - and a lot of people complained that it wasn’t a “constructive” way for chronic illness patients to communicate. But given plenty of doctors weren’t listening BEFORE this got them all upset… Here’s a write up on it, & I suggest taking a look and thinking about why some people were more offended than worried about the quality of patient care
WTF is chronic pain like?
That’s what my talk/Part 1 were about, but here’s some less formal stuff…
I wrote about what pain is like for me here, and you can find more people talking about their own experiences on hashtags like #MyPainDay, #chronicpain, #painsomnia, #brainfog, etc
An OT with EDS wrote about their experience from both sides here
Here’s an open letter from a person with chronic pain about the things they’d like you to know (it’s a lot more detailed than my talk)
For the listicle-lovers; 16 things people in chronic pain want you to know (just bear in mind for this as always… Chronic pain is not one universal experience, so not everyone is gonna agree with/experience all of this)
Wow, this is a lot of social media stuff!
Yes, and that shouldn’t really be surprising. Teh internets enables many people who can’t access traditional modes for community/leisure/work activities to get those things now - and a lot of that is via social media. A big chunk of my work and income arrive via my online stores, crowdfunding, and social media connections. I don’t watch TV but I share a lot of podcast recs with spoonie people via social media, and that’s really important for studio life (working as an artist can be monotonous and really isolating). You can watch TV/films/do popcorn/have a meal with chronically ill friends online - for example, check out #ChronicLoaf with Mae_DaeJ streaming on Rabbit. When I have spoonie problems, social media is the first place I go - ask a question and you’re almost guaranteed to find people with the same experience. Twitter communities have helped me empty a broken down dishwasher while sick, find the best mobility & cookery aids, and check that weird chronic pain side-effects are ‘not just me’. If you want to know what’s happening in Chronic Life, social media is a good place to start.
Disability and chronic illness/pain are not the same thing, but often come as a twofer, so…
Here’s some people to follow/stuff to read that I find helpful from the point of view of being disabled and having chronic pain. Again this is a tiny fraction of the amazing people out there writing, and there are loads of people I want to mention but I only have so many spoons to write this; so apols to everyone I’ve missed, I’ll update this post when I can.
Chronically Academic is a network for disabled & chronically ill scholars
Disability Arts Online provide UK DisArt news
DisabilityHistory does what it says on the tin; inform about the history of disability!
Heading across the pond, Alice Wong & Disvisibility are essential reading/listening for me, along with Kim Sauder (Twitter - Blog), & Michele in NYC (Twitter - YouTube). There are too many people I could list here, many sorries to people I’ve missed off!
As a resource EbThen’s Disability 101 Flashcards come in super-useful for explaining stuff, as do Yellow Submarine Down Under’s #SayTheWord posters, which are hilarious and I love them - they feature ridiculous things that non-disabled people say, but turned around back to them. 3 of my favourites are below
Finally, evergreen words I can’t resist sharing; Heather Ure - “don’t let your lack of disability define you”
A word for those thinking “you all sound angry a lot…”
Yeah, no shit. Just from my perspective as someone in the UK;
The british government is breaching chronically ill and disabled people’s human rights and
Killing off plenty of disabled/ill people via it’s shitty welfare system, and
Killing off plenty more via austerity, and
Some chronic pain patients die here before they even get seen, and
That’s before we even address the disparities some people face in pain treatment because of disability, gender, ethnicity, sexuality, etc - pls go investigate the history of research on that, it will teach you a lot, I promise you
To put the icing on the craptastic-cake hate crime against disabled people in the UK is rising (my own personal experience of having abuse yelled at me in the street is pretty scary)
In an employment setting; I work in the arts now - ~20% of the working age population here have some kind of disability or chronic illness, but only 4-6% of people working in publicly funded arts orgs, museums, etc are disabled
The NHS is being deliberately chronically underfunded and run down, hitting the chronically ill first and worst, and we’re about to get smacked in the face with the worst consequences of brexshit (go google some links for that yourself, because I’m tired, and the chancellor is on the news today telling us that oops there will be no NHS brexit dividend)
You’re chuffing right I’m angry. I’m here to chat, but do not tell chronically ill and disabled people not to be angry. That’s a top tip that will save you so much grief right there.
That is probably more than enough places to start working on your understanding for patient life experiences and communities. So I’m going to save my spoons for talking to people tomorrow. I’ll try and update this post when I can because I know there are a zillion things I’ve missed, but I hope it’s at least a little bit helpful to some of you, spoonie or otherwise.