Pressing the 'Pause' Button More Than 'Play': Living With Long Covid
We need support, not sympathy; therapeutics not therapy; cures not contempt; love not betrayal.
“chronic illness brings misery but invaluable lessons too. It unveils relationships, sifting genuine from superficial. It exposes society’s systemic ableism, even among the ostensibly progressive. It reveals how conditioned the world is by ableist norms, how difficult life is when you don’t fit”
17.03.2025 03:31 — 👍 147 🔁 40 💬 3 📌 3
Ik had gisteren niet de mentale energie om me uit te spreken over #LongCovidAwarenessDay
Dus dat wil ik nu nog even doen.
Ziek zijn is vreselijk. Ziek zijn, niet geloofd worden en geen behandeling krijgen nog veel erger. Er moet onderzoek en aandacht komen voor PAIS!
16.03.2025 09:25 — 👍 18 🔁 4 💬 2 📌 1
Ik ben al 5 jaar ziek. Ik ga eerder achteruit dan vooruit. Huisgebonden, vaak bedgebonden. Verdwenen uit de maatschappij en uit de levens van dierbaren. Met mij honderdduizenden anderen
#NietHersteld #5JaarLongCovid #LongCovidAwarenessDay2025
@niethersteld.bsky.social @jetroz.bsky.social
15.03.2025 13:00 — 👍 120 🔁 37 💬 8 📌 5
Afbeelding van Berlin Buyers vertaald door #NietHersteld
"Hoe onze overheid omgaat met PAIS is niet nice."
Als we PAIS (Post Acuut Infectieus Syndroom) serieus hadden genomen hadden we nu niet zo'n groot probleem.
Als PAIS als een reële mogelijkheid werd gezien na een infectie, hadden we de pandemie anders aangepakt en waren er minder chronisch zieken.
#LongCovidAwarenessDay2025
15.03.2025 13:45 — 👍 11 🔁 6 💬 0 📌 2
I’ve been sick for 1069 days. How much longer?
#NotRecovered #NietHersteld
#5YearsLongCovid
#LongCovidAwarenessDay2025
15.03.2025 10:42 — 👍 2 🔁 0 💬 0 📌 0
A black and white photograph of a man lying on a bed, with his head resting on a pillow and his hand clenched into a loose fist in the foreground. His face appears distorted due to motion blur.
Wired And Tired
#pwME #MECFS #Photography
14.03.2025 12:02 — 👍 45 🔁 8 💬 3 📌 0
We aren’t invisible, we are made invisible
It is Women’s International Day on 8th March. Let’s talk about women’s health and how we are made invisible
Beautiful article for International Women’s Day about invisible disability.
Are we invisible? Or are we made invisible when people don’t believe us? Don’t validate our experiences?
Many of us hide our disabilities because of rampant ableism, but even when we stop hiding, folks choose not to see us
08.03.2025 10:33 — 👍 200 🔁 61 💬 4 📌 4
While I‘m so glad I am still able to listen to music sometimes, every year my Spotify wrapped being less ‘total minutes listened’ just feels like proof that part of who I am is fading away!
12.12.2024 08:53 — 👍 0 🔁 0 💬 0 📌 0
Can we generally talk about how confronting this time of the year is though? #NEISvoid #ChronicIllness
12.12.2024 08:46 — 👍 10 🔁 1 💬 1 📌 0
In true chronic illness fashion, my phone‘s photo app made a little year-in-review video composed almost entirely of photos of my cats I took from my couch
12.12.2024 08:39 — 👍 16 🔁 1 💬 2 📌 1
When you’re chronically ill - your baseline is everything. You will protect it at all costs.
Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.
That’s why we don’t take necessary risks. We know what’s at stake.
13.11.2024 06:47 — 👍 808 🔁 207 💬 20 📌 13
Thanks for making the starter pack and sharing about it! 🙏🏼 I don’t think I would have come here again otherwise but I’m already finding it way more enjoyable than last time cause I’m following more folks and there is just way less clutter than over on twitter!
13.11.2024 10:53 — 👍 1 🔁 0 💬 0 📌 0
writer + journalist covering health justice, wellness culture, LGBTQ+ stuff + more...
https://www.fionalowenstein.com/
The Long COVID Survival Guide:
https://theexperimentpublishing.com/catalogs/fall-2022/long-covid-survival-guide/
they/them
abolitionist artist / CEO of GAY ARBYS / sentient sandwich
linktr.ee/lizwhatsherface
realgayarbys.com
News and information about interventional trials for Long Covid, ME/CFS, POTS, and other post-viral illnesses. Message or tag me if you’re in a trial or otherwise have information to share.
#LongCovid-disabled first waver. Loves gardening and decorating. Cheese addict. Science. Climate. 🏳️🌈 ally. Pardon my French! 💚 Green means hope. #AirborneAware 😷 #FuckTrump🖕 #SlavaUkraini 🇺🇦
COVID long-hauler, former archaeologist, opera singer, now fed employee. Kids, homeless, dogs. Isotopes+🍩 #WearAMask
🌎 Disorient Express
FB: is.gd/bp2vTA
Media: covidlonghaulers@gmail.com
YouTube.com/@covidlonghaulers
Signal rubyslippahs.74
She/her
Interested in research and awareness of invisible chronic illnesses: ME, Long COVID, Post Vaccine injury, POTS, Sjogrens, and Lyme.
Pfp: A man wearing a green face mask
Banner: Colorful MEmes from patient-led Long COVID and ME awareness
Disabled & chronically ill writer. Former theatre critic. Clean air is a human right & vulnerable people aren’t expendable. Covid is airborne 😷
https://www.disabledginger.com
A redheaded snippet who loves Sondheim. Once fainted into Hugh Jackman.
A nonprofit news site chronicling the #LongCOVID crisis. Founded by journalists @BetsyLadyzhets.bsky.social & @MilesWGriffis.bsky.social
Website: thesicktimes.org
Newsletter: thesicktimes.org/newsletter
Donate: the-sick-times.fundjournalism.org
Scientific Director, #MEAction
Stanford Med
Université de Montréal
TIME100 Health 2024
#ME, #EDS, #POTS, #LongCOVID
Views my own
exceedhergrasp1 on Twitter
Patient-Led Research for #LongCovid! http://patientledresearch.com
Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet
#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist.
Another Australian (Cypriot & Greek) designer existing in Berlin. Been to hell & back thanks to the pandemic. End #prescribedharm #longcovid #MECFS check @sophsoph.psd & @berlin_buyers_club on the gram
Author, editor, activist, cat lover. Founder of the Disability Visibility Project.
#DisabilityJustice feed I created:
https://bsky.app/profile/did:plc:65kss3ewg5ida5mjyuk73v5r/feed/aaaba7ikg4sho
More about me
https://linktr.ee/disability_visibility
Coming in early 2026: KEYWORDS/KEYIMAGES IN GRAPHIC MEDICINE
Current projects: #IllnessPolitics, chronic forms, & multi-modal pedagogies in action. Author of ILLNESS POLITICS & HASHTAG ACTIVISM, TREATMENTS, & INDIRECT ACTION.
Blogging at: lisadiedrich.org