Mastodawn

“With My Hands: Raising Lupus Awareness Through Love, Art & Advocacy” https://notestotomorrow.com/with-my-hands-raising-lupus-awareness-through-love-art-advocacy/ #LupusAwareness #LupusWarrior #BlackWomenAndLupus #ChronicIllnessAwareness #LupusDoesntHaveALook #LupusStrong #InvisibleIllness #BlackHealthMatters #SupportSisters #MentalHealthAndChronicIllness #SpeakWithYourHands #HealingThroughArt #RebeccaStrong #SpoonieSister #HandmadeForHope

“With My Hands: Raising Lupus Awareness Through Love, Art & Advocacy” - Notes To Tomorrow

Spread the loveMay is Lupus Awareness Month, and for me, this month holds a special meaning. This journey started not with me—but with my sister, Rebecca Kelley (Lang). In 2009, Rebecca was diagnosed with Lupus after years of unexplained pain. Despite hurting every single day, she kept pushing forward. Her strength inspired me. I would […]

Notes To Tomorrow

Chronic Illness Humor Funny 5d ago

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmunememes #fibromemes #fibromyalgia #spoonie #invisibleillness #spoonielife

Tom Kindlon Apr 22

Psychology Today: “I'm the Mom, But No One Listened to Me”

https://www.psychologytoday.com/us/blog/risking-it/202501/im-the-mom-but-no-one-listened-to-me

Becky Diamond describes repeated experiences of teachers & clinicians not believing her child was sick, including with Long Covid.

#LCKid #LongCovidKids #LongCovid #invisibleillness #chronicillness @chronicillness @spoonies @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain

I'm the Mom, But No One Listened to Me

My son had Long COVID. I assumed his situation would be understood, thanks to science. But I discovered that my voice wasn't heard even though it mattered most.

Psychology Today

Tom Kindlon Apr 19

Blogpost giving some tips on how to maximise the usefulness of appointments with doctors.

https://www.carermentor.com/p/how-to-close-patient-doctor-disconnects

#DoctorPatientRelationship @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#1 'How to close patient-doctor disconnects.'

Building our language/questions to feel like we've done our best to advocate for ourselves AND improve our chances of being heard in a medical consultation.

Carer Mentor: Empathy & Inspiration

Tom Kindlon Apr 16

I found this blog post interesting.

The research found 3 themes relating to loneliness in chronic illness.

It then mentions a writing exercise one can do to analyse these in your own situation.

https://www.psychologytoday.com/ie/blog/chronically-me/202504/the-link-between-loneliness-and-chronic-illness

#chronicillness #chroniclife #Spoonielife #hiddenillness #invisibleillness #Spoonies @chronicillness
@spoonies
@disability
@longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #dysautonomia @dysautonomia @mecfs
#MEcfs #CFS #PwME

The Link Between Loneliness and Chronic Illness

A recent study does a deep dive into the painful intersection of loneliness and chronic illness.

Psychology Today

Tom Kindlon Apr 15

An example of the thoughtless or insensitive comments people with chronic illnesses can sometimes hear

From a blog post by an Irish woman with ME who has become a published writer
https://solongasicanbreathe.wordpress.com/2025/04/14/walking-ambling-stumbling/

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@chronicillness
@spoonies
@disability
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Walking, Ambling, Stumbling

Change was abundant as I approached my five year anniversary of illness. By then, my sister had three children and friends too were adding to their families as people grew and jobs too grew by prom…

solongasicanbreathe

Tom Kindlon Apr 13

@chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Tom Kindlon Apr 11

"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"

https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/

Image is from April 2025 AMMES Newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC @chronicillness
@spoonies
@disability
@disabilityjustice
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride - The Sick Times

How can people with energy-limiting conditions march for our rights if we have negligible physical capability and exertion worsens our symptoms? My colleague Mlindeni Gabela and I are pioneering a new kind of protest in South Africa: SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge, which we feel is a precious resource post-2020.

The Sick Times - Chronicling the Long Covid crisis

Tom Kindlon Apr 11

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"

Links:
https://www.cards2warriors.org/
https://www.cards2warriors.org/happy-mail

Image from Institute for Neuro-Immune Medicine e-bulletin

#chronicillness @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Cards2Warriors

People who are suffering from chronic pain, illness, and rare disease can sign up to receive cards of encouragement and hope.

Cards2warriors

Sp4rkR4t

Apr 11

Woke at 5am, #visible illness tracker gave me a 1/5 for the day but felt clear enough apart from quite a lot of bone pain so went to shops for soap & bonus cakes. Got home to alerts I've used all my spoons for the day and a feeling like I'm sinking into the ground, going to prop myself up on the bed for the day now and try out these controller controls on Satisfactory.
I did try one of the cakes and they are mindblowingly awesome though so it was worth it. #MECFS #MPN #invisibleillness #crieff