explore | Grilled Cheese

Tip from someone who learned the hard way: bring data to your doctor appointments. Even rough notes about when symptoms happen and what makes them better or worse can change the conversation completely.

#PatientAdvocacy #ChronicIllness #HealthTracking

#Actions speak louder than words. Where are you focusing your time and energy, & what or whom for? Where do your #priorities lie? If the things you take pride in are all suddenly taken away from you, who are you?
🔗
buff.ly/YnTDkIM #SelfIdentity #ChronicIllness
@achronicvoice.com

I’m celebrating eight years with my heart transplant!
This year, we’re going on a trip!

#transplant
#chronicillness
#disability

Adventures of the Heart
dawnlevitt.substack.com/p/adventures...

Is there a “frequent flyer” equivalent for riding the struggle bus?

I feel like I’ve been booking a lot of mileage recently.

#chronicillness #chronicpain

This is what brain fog is, and why it is so debilitating. It’s also suffering deep burns on your hands because your reactions were too slow to notice they were being seared by the oven rack. #chronicillness #brainfog #disability

Tracking my symptoms for just two weeks helped me spot a pattern I'd been missing for years. Turns out my worst flare days lined up with certain foods. Sometimes data reveals what intuition can't.

#SymptomTracking #ChronicIllness #HealthTracking

"Irvin Yalom, a noted #existential #therapist, outlines four major concerns of existential #therapy: freedom, meaninglessness, death and #isolation (Akbari et al, 2023). Each of these themes is present in the #ChronicIllness experience.": buff.ly/gfdVkuk

#MentalHealth
via @psychologytoday.com

The worst part about chronic illness isn't always the pain. It's the uncertainty. Not knowing if tomorrow will be a good day or a bad day. Learning to plan around that is a skill nobody teaches you.

#ChronicIllness #ChronicPain #InvisibleIllness

Some days, the world felt too loud. Bright lights, noise, strong smells, and busy spaces could intensify symptoms. Choosing quiet and stepping away wasn’t weakness. It was self-care💜

#Fibromyalgia #MECFS #ChronicIllness #Spoonie

#ChronicIllness #Disability
The most well-meaning “suggestions” from friends do not consider my reality.
Them: “You need a nice vacation to relax.”
Me: I’m immune compromised & do not “do” public places 😷 . I don’t walk & need my mobility scooter 🛵; can’t have 🛄 damage. No to ✈️; my home is safe.

I’d really like a chance at life.
I need a stable, safe environment. Without it, I will continue to decline & die.

#MutualAid #ChronicIllness #MyalgicEncephalomyelitis #MECFS #MCAS #POTS #EhlersDanlos #LongCovid #Endometriosis #ChronicPain #Dysautonomia

chuffed.org/project/1619...

If you or someone you love is tired of explaining their health from memory:

Send this to them. Repost to help someone find it. Follow for more.

#ChronicIllness #HealthTracking