I don’t write about being chronically ill very often, mostly because I’m still thinking it through in real time.
This short piece is about effort, belief, and what it’s like to live in a culture that insists improvement is always possible…even when your body says otherwise.
https://kristiedegaris.substack.com/p/effort-without-improvement
#Health #Scotland #UK #Writing #WritingCommunity #Books #Reading #Women
Great posts in this thread.
Now I'll read the article 😊
@kristiedegaris v. helpful to reflect on!
This week i've been short-term crisis care for a friend with long-term CFS while her pet's been unwell. Reading your piece helps understand her frustration with herself, as well as the ableism in my own "improvement drive"
"Daily resistance" sounds right. I knew a martial arts teacher who said "don't expect to win, don't expect to lose". Holding that balance feels hard enough, without past experience leading you to dwell on the worst that can happen...
Thank you so much for this. Exactly my experience since 2012 (brainstem stroke with left side hemiparesis). Fighting my way out of a wheelchair wasn't "enough" for the world. Nor what I've been doing to avoid having to rely on one again or to avoid leg/foot, arm/hand spasticity getting worse and worse. At some point I just gave up (people, not myself). I'm thanking the universe for being extremely introverted, so I have no problem with having been alone in my 1 room flat for 11 years now.
@kristiedegaris Wow! That's beautifully written and described.
"Ableism isn’t just cruelty or ignorance. It’s the enforcement arm of meritocracy, which exists to protect the hyper-capitalist belief that ‘more’ always pays off. "
@kristiedegaris
Wonderful writing and very insightful 💚
@kristiedegaris Ah, the brain and the search for the Magic Pill. I do that sometimes.
I was diagnosed with stage 4 prostate cancer 19 months ago. I didn't, and still don't, feel ill - but I am, terminally. Chemo largely worked and I'm taking a cocktail of drugs to keep me "maintained".
I'm still working full time, but I'm increasingly finding my capacity to has reduced and this brings along all sorts of guilt about others picking up my workload.
Yep. It sucks to be chronically ill.
@greem Solidarity my friend, the road is long and the mind full of terrors (mostly about how society will perceive us if we act like we need to) <3 Hope you're weathering it all OK.
@kristiedegaris Some of the time I forget that I have it, and always will. But there's always something that'll remind me.
I've realised recently that I've spent my life pretty much living in the "right now". The past can't be changed, the future is yet to happen, so I wake up each day and think "right, what now?". This is both a good, satisfying approach but also one filled with horror as you say!
@kristiedegaris ...and in my specific case nobody yet knows just how long that road will be.
There will come a point where the light in the distance really is an oncoming train 😁
Still, I've got trips booked and plenty of stuff to be getting on with (including your book which is nearing the top of my to-be-read pile!).
Cheers!
@greem What trips do you have planned? What are some books you've really enjoyed recently?
@kristiedegaris At present, a few days with old uni mates who are cycling in France & Belgium (I'm in the "support car"), two weeks in Canada to see two of my oldest friends who emigrated 15 or 16 years ago, and a few days in Ireland doing family history stuff.
Books... "Have A Bleedin' Guess" by Paul Hanley (the story of The Fall's first proper album), Zak Brown's autobiography "Seven tenths of a second" and Sabrina Cohen-Hatton's autobiography "The Heat of the Moment"
@kristiedegaris
"the enforcement arm of meritocracy"
So well put, and points at the underlying belief that in a Meritocracy, ill outcomes are a sign of moral turpitude and deserving of scorn
The first time I twigged that time and health living don't naturally solve all health issues, was the discovery that hernias don't heal. If you don't get it stitched up, that tissue just stays tattered - it never heals.
Oh well, there went *that* romantic notion. Sometimes a broken body stays that way
@kristiedegaris Great text! I love the "ableism is the enforcement arm of meritocracy" point.
@kristiedegaris You Are Not Alone. Thank you for this piece 🙏🏼🎯❤️🩹
“That lifelong pursuit of wellness meant that when perimenopause hit, new diagnoses stacked up, and my health rapidly worsened, I was crushed by the realisation that I was never going to get better. It was only at this point that I actually accepted I was chronically ill and had been for decades.”
@kristiedegaris living with a adult family member who has had Crohns for 20 years, I am holding my hand up and saying it took me years to understand he will never get better than he is now. Perhaps part of it is not wanting to accept this about someone you love. Also lack of emotional support from anybody even now for both him and family members.
@muminitaly I think society sells us the lie so effectively that it is hard to accept that not great could be the best it gets. As I said in the piece, it took me 20 years to accept it for myself.
@kristiedegaris @muminitaly
My father has Alzheimer’s, and he’s been as lucky as you can be with that, in that he’s progressed very slowly, plateaued for long periods, and he’s generally happy, physically strong and healthy, and he’s not really suffering; he just has no memory. But even for something like that, people don’t get that it’s a one-way street. 1/3
@kristiedegaris if something isn't visible on the outside, then people seems to assume it's nothing at all... and if you have on top of that something that has no treatment and no clear cause for it, then things are even worse, people expect you to be "normal".
@kristiedegaris thank you, what an insightful piece (again).
I hope you will find some space for yourself to accept that it's really not your fault 
@kristiedegaris I have a permanent leg injury due to a past episode of compression syndrome. Half my lower leg muscle had to be removed.
Some family members refused to believe me when I said the doctor told me not to bother with physical therapy because the muscle was literally gone, there was nothing to rehabilitate. They assumed I was making it up out of laziness.
Like, I literally can't regrow lost muscle. I'm not a lizard. Which apparently means I'm lazy.
@thomasembree I find it fascinating the mental gymnastics people will do to convince themselves that improvement is always possible. I'm sorry you deal with this, it's their job to do the work but ableism feels like one of the last fully acceptable forms of discrimination.
@kristiedegaris They stayed on my back about it for a while and eventually I caved because they offered to pay the $800 for the initial like two weeks of sessions and I figured "fine, if it's not costing me anything and they shut up about it, I might as well go".
Guess what the physical therapist said immediately after I described the injury? "There's very little I can do for you realistically".
I remind them of this incident any time they hold me to unreasonable expectations, now 😏
@thomasembree I'm glad they have finally, sort of, come around. And well done advocating for yourself, although this is another exhausting part of being chronically ill/disabled.
@kristiedegaris Well, I barely even have a limp now and only use a cane outside *in case* my ankle rolls or something. Not because of physical therapy, but natural recovery (gait change, mostly; it was literally like relearning how to walk). But they still try to chalk it up to either the two weeks of physical therapy (lol no), or the foot exercises I did in hospital to prevent drop foot in the long term (completely unrelated)
It just healed well, it was luck. Nothing more.
@thomasembree I'm glad to hear things are easier but lol at the 'miracle' of two weeks of therapy and foot exercises.
