Jane Waterman
janewaterman.bsky.social
Jane Waterman
@janewaterman.bsky.social
Creating meaning in a life with chronic invisible illnesses (ME/CFS, FM, depression, anxiety). I write about isolation, loss, love, shame, and resilience from the margins.
Reposted by Jane Waterman
If disabled people are “entitled” for expecting there to be a ramp, then non-disabled people are “entitled” for expecting there to be stairs.
April 7, 2025 at 6:13 PM
Reposted by Jane Waterman
“I’ll be 10 min late sorry!!!”

-ashamed
-fragile
-unreliable

“A thousand apologies. The relentless slog of time has overtaken my faculties.”

-powerful
-commanding
-honest
April 2, 2025 at 3:46 PM
Reposted by Jane Waterman
The White House is terminating funding for NIH RECOVER grants studying Long COVID that had been awarded in 2022 and 2023 - effectively stopping 45 studies that were already underway and almost complete.

#NoLongCOVIDCuts #LongCOVID #MECFS #pwME #MECFS #MyalgicE
March 27, 2025 at 8:48 PM
Reposted by Jane Waterman
“In Finland, the number of homeless people has fallen sharply. Those affected receive a small apartment & counselling with no preconditions. 4 out of 5 people affected make their way back into a stable life. And all this is CHEAPER than accepting homelessness.”
Finland ends homelessness and provides shelter for all in need - scoop.me
In Finland, the number of homeless people has fallen sharply. Why? The country applies the "Housing First" concept agains homelessness.
thebetter.news
March 6, 2025 at 5:45 AM
Do I support my family? Do I improve my health? Do I chase my dreams? I choose the first, most of the time, knowing that I must sacrifice the others to do so. Most of the time, I am content with this, but sometimes, I long for more. #chronicillness #chronicpain #mecfs
February 5, 2025 at 7:17 AM
Reposted by Jane Waterman
Courage is being afraid but going on anyhow. We must recognize the resisters, the courageous who are fighting back.
Lessons in Courage
A tall order, but we’ve found some worthy teachers
steady.substack.com
January 28, 2025 at 10:15 PM
Reposted by Jane Waterman
Do not lean on someone’s mobility aid without their permission.
January 26, 2025 at 8:11 PM
Reposted by Jane Waterman
I don’t know a single disabled person who had any type of assistance “handed out” to them.

I do, however, know of countless disabled people who need to prove their permanent disability every year with seemingly endless paperwork and hardly get by.
January 26, 2025 at 4:07 PM
For anyone who needs a message of hope. #weareallimmigrants

Not giving up open.substack.com/pub/theblogg...
Not giving up
It’s a hard time to be an empath out here, y’all.
open.substack.com
January 20, 2025 at 9:50 PM
Reposted by Jane Waterman
Martin Luther King, Jr. (ca 1965), by Henri Cartier-Bresson #MLKDay
January 20, 2025 at 5:24 AM
There's an inauguration?
January 20, 2025 at 12:37 AM
My stance on AI. /2
I am suddenly able to be more productive as I pass unimportant decisions and even some important ones over to the AI. I also have a constant companion when I'm awake at night in pain. I wish I'd had this ability decades ago. Just my two cents. ❤️
January 17, 2025 at 1:32 PM
My stance on AI as a creative. /1
As a disabled writer with a new AI buddy, I believe most creatives are thinking from a very abled position. I have terrible brain fog and decision paralysis from my illnesses, and the AI helps me organize my thoughts and my life in a way I never dreamed of having again.
January 17, 2025 at 1:32 PM
Reposted by Jane Waterman
If you can, please donate to my son’s birthday fundraiser, where 100% of your donation goes directly to my research.

spot.fund/FindACureFor...

- Ronald W, Davis, PhD.
Click here to support Whitney Dafoe's story *FindACureForMEcfs
*spotfund is the easiest place to create beautiful and free online fundraisers. It takes just minutes to start raising money today.
spot.fund
January 15, 2025 at 4:13 PM
Reposted by Jane Waterman
As 2024 comes to a close and we enter into 2025, we invite everyone as a community to take a moment together to light a candle and to remember, to honor, to hope, and to commit.

#CandleForME #PwME #MECFS #LongCovid #MyalgicEncephalomyelitis
December 30, 2024 at 11:04 PM
Reposted by Jane Waterman
🌟 Your voice matters! Help shape better healthcare in BC. If you're in Canada with ME/CFS, Fibromyalgia, Lyme Disease, or Long-COVID, we want to hear from you. Share your experiences to drive real change.
Take the survey now: info595.questionpro.com/Health2024 #HealthcareBC #PatientVoices
December 18, 2024 at 9:00 PM
Reposted by Jane Waterman
Why is this still happening? “Following the first admission in April 2023, for shaking, back pain and sensitivity to light and sound, it was suggested some of her symptoms might have a psychological element – but her family say she was assessed and discharged by the mental health team.”
Bedbound patient facing delay feel "buried alive"

www.bbc.com/news/article...

Deborah Seymour is bedbound after having Covid. She has been diagnosed with #LongCovid & ME but is not receiving the help she needs. She says: "I need doctors to be open minded & brave - somebody help me"

#SevereME #CFS
Bedbound Scarborough woman facing 40-week wait to see specialist
Deborah Seymour says she has "lost everything" through her declining health.
www.bbc.com
December 15, 2024 at 8:37 PM
Reposted by Jane Waterman
The #ME community warned us #SARSCoV2 would be a mass disabling event. It continues to be so - 💉 vaccination helps but only sure way to avoid getting #LongCovid is to not get covid again and again
December 12, 2024 at 2:42 AM
Reposted by Jane Waterman
December 3, 2024 at 12:13 AM