Chronic SOS - August 8, 2023
FINALLY!
After the latest update of Squarespace, I was unable to blog! Most of the issues are resolved now, so August will be a month of "makeup" posts as I edit and publish posts that I intended to share in July.
I hate that I wasn't able to post during Disability Pride Month. I posted on Tumblr frequently and celebrated there - if you're a spoonie, I highly recommend joining Tumblr! There's a large online community of fellow spoonies there!
Let's look at some funny medical and spoonie tiktoks today:
Tiktok is like a dopamine slot machine and though there's a dark side (as with any tool), there are a lot of great content creators too! If I'm bored and sick, I often scroll through it; my "for you page" is full of comedy, animals, and spoonie content.
Click images to be taken to the tiktok
Let's start with one of my favorite tiktokers, Joseph Kibler:
Joseph is excellent at educating people about disabilities - without them realizing it's educational! He uses a variety of different mobility aids: cane, crutches, wheelchair, as well as sometimes not needing any. He uses all of them in his content and helps normalize dynamic support needs.
Perhaps most notably, he's very charismatic and has a great sense of humor! Not surprisingly, he's an actor and has appeared in Chicago Med, CSI: Cyber, Criminal Minds, and more.
Continuing with creators who are both funny and spread awareness:
Jimmy Jan is a paraplegic Australian Tiktoker who shares content about his daily life, comedy skits, and more. He also has appeared on the podcast, ListenABLE, to discuss his accident, rise to prominence on social media, and how his life has changed.
In this video though, he's imagining how a career as a lifeguard miiiiiight not go so well. Though I admit he wouldn't be my first choice, I am envious of his beach wheelchair!
This one made me almost choke from laughter:
Daniel Moseley is a paraplegic British comedian. He describes himself as a stand up comedian, but is only 50% of that. I don't hold it against him though; a lot of his content makes me and my friends wheeze with laughter!
I have not found any boring tiktoks from him and many are very relatable.
Speaking of relatable, this skit absolutely nails the chronic pain experience:
This should honestly be a required video for doctors to watch. Like most of us, Ali DiGiacomo uses humor to cope with her chronic pain and illness. She has Rheumatoid Arthritis (RA), a very painful autoimmune condition that primarily affects the joints, but can also attack other tissues. About 75% of RA patients are women, so misogyny is often at play.
Though this is just a short comedy skit, it perfectly explains how the 1-10 pain scale is different for people with chronic pain. It can be difficult for others to understand just how much pain there is normally and can be dismissed as just a "hysterical woman", an exaggeration, or any other random excuse. Her modified pain scale is described level by level and what the spa would do for each one - I wish it existed!
She also mentions how healthcare providers can dismiss patients with chronic pain and how spoonies try to cope with it: dark humor, researching what could be wrong, crying and screaming on the floor, and trying to force doctors to find out what is wrong before being discharged from the hospital. It is exactly what I - and every chronic pain patient I know - constantly experience in the pursuit of just trying not to be in agonizing pain and suffering indefinitely.
The last part got more serious than I originally anticipated; but to end on a lighter note - we should have a disabled comedy show! I'll be working through some of the specifics, but I envision a virtual comedy show by disabled people for disabled people.
Who would you want to see? Comment below!
Stay tuned for more info!
(Hopefully in the winter I'll have more info)
See something that made you laugh or smile recently? Send it to me with my Google form and I may use it in future posts and give you a shoutout!
