Carrie - MySeveralWorlds - Artist, Author, Advocate

I've spent hundred of hours with healthcare and disability plus support for repatriating with no time to plan.

💚 Low and behold, my care coordinators pivoted with me. It has reduced my load a bit, but it's still a lot.

I am seeing gaps in the system here that I can fill when I am stronger.

Starting Monday off in #MedicalBurnout... I have had a whopping 17 health appts - all at different locations since Feb 9.

Last week I started pushing for virtual appts as that is way too much.

👉 When I started pushing for better #AccessToCare, I cited #MedicalBurnout and gave them my info.

Starting Monday off in medical burnout... I have had a whopping 17 health appointments - all at different locations since Feb 9. Last week I started pushing for virtual appointments as that is way too much. 👉 When I started pushing for better #AccessToCare, I cited #MedicalBurnout and gave them that info. 💚 Low and behold, my care coordinators pivoted with me. It has reduced my load a bit, but it's still a lot. I am seeing gaps in the system here that I can fill when I am stronger. EXHAUSTING THINGS THAT LEAD TO MEDICAL BURNOUT ✔️ constantly having to advocate for your health ✔️fighting for a diagnosis or answers to a diagnosis ✔️ keeping track of prescriptions and supplements ✔️ spending hours on the phone making appointments, getting referrals, or handling insurance (literally hundred of hours now with healthcare and disability plus support for repatriating with no time to plan and under duress) ✔️ your body paying the price for having fun ✔️ accruing medical debt ✔️ loss of trust in medical professionals from prior gaslighting or medical trauma ✔️ keeping organized with multiple specialists Credit Dear Chronic Pain

EXHAUSTING THINGS THAT LEAD TO #MEDICALBURNOUT

✔️ constantly having to
advocate for your health
✔️ fighting for a dx
✔️ tracking of Rx
✔️ hours on the phone making appts, getting referrals
✔️ accruing medical debt
✔️ loss of trust in med pros
✔️ keeping organized with many specialists

Dear Chronic Pain

You Don't Have to be Strong, Just a Little Stronger Than Before Sometimes telling ourselves to be brave invokes fear. Here's why you don't have to be strong, just a little stronger than before.

"We often tell ourselves or others to be strong. Instead of instilling inspiration... it becomes another standard we have to meet. You don’t have to be strong all the time. One small step forward is still a powerful act." Via @achronicvoice.com
🔗
www.achronicvoice.com/2018/05/13/y...

#ChronicPain

BODY PART RETURN REQUEST ORDER #: CursedSinceBirth-001 DATE OF MALFUNCTION: Ongoing PRODUCT(S): • KNEES (x2, Both traitors) • IMMUNE SYSTEM (Overactive & Underqualifued spine (Structurally decorative) • SKIN (Rash mode enabled) • BRAIN (Won't focus, won't but up) REASON FOR RETURN: ☐ DOESN'T WORK ☐ CONSTANT PAIN ☐ RANDOM SWELLING ☐ EMOTIONAL SABOTAGE ☐ POSSESSED JUST VIBES (According to doctor) PREFERRED RESOLUTION: ☐ Replacement ☐ Store credit □ Trade for lizard body ☐ Just take them back please RETURN POLICY TERMS: • Must be returned in original packaging • Refunds not available if already seen by five specialists • Processing time: 6-8 millennia If returning immune system, beast deactivate "self-destruct mode" before shipping. We are not liable for internal warfare during transit. Credit Unknown

BODY PART RETURN REQUEST
ORDER #: CursedSinceBirth

DATE OF MALFUNCTION: Ongoing
PRODUCT(S):
• KNEES
• IMMUNE SYSTEM
• SKIN (Rashes)
• BRAIN

REASON FOR RETURN:
☐ DOESN'T WORK
☐ CONSTANT PAIN
☐ RANDOM SWELLING

PREFERRED RESOLUTION:
☐ Replacement
☐ Store credit
□ Trade for lizard body

"Autoimmune fatigue is completely different to being tired/exhausted. Chronic fatigue is as bad as chronic pain. They are equally disabling. There is rarely any relief from it. We can't escape it. We feel it in every inch of our bodies." Credit: My Several Worlds #axSpAAwareness #PsoriaticArthritis

"Autoimmune fatigue is completely different to being tired/exhausted. Chronic fatigue is as bad as chronic pain. They are equally disabling. There is rarely any relief from it. We can't escape it. We feel it in every inch of our bodies."

Credit: My Several Worlds
#axSpAAwareness #PsoriaticArthritis

A person in their darkest hours doesn't need a pep talk. They need to know someone else sees and understands the darkness. Credit: Nate Postlethwait @nate_postlethw #LifeReminders #KindnessMatters #MySeveralWorlds

A person in their darkest hours doesn't need a pep talk. They need to know someone else sees and understands the darkness.

Credit: Nate Postlethwait
@nate_postlethw

#LifeReminders #KindnessMatters #MySeveralWorlds

CAR RIDES WITH CHRONIC PAIN FEEL LIKE THIS: ‣ Stuck in the same position with no way to stretch ‣ Every bump feels like an impact Seats that never support the right places ‣ Muscles tightening because your oodv's on high alert ‣ Pain stacking on top of your 'regular pain' Fatigue hitting way sooner than it should ‣ Trying not to show how uncomfortable vou are It's not "iust a drive." It's something you have to get through. Credit: Surviving Chronic Pain #ChronicPainAwareness #MySeveralWorlds #LetsTalkAboutPain

CAR RIDES WITH CHRONIC PAIN FEEL LIKE
*Stuck in the same position with no way to stretch
*Bumps are impact
*Muscles tightening/ body on alert
*Pain on top of regular pain
It's not iust a drive. It's something you have to get through.
Credit: Surviving Chronic Pain
#MySeveralWorlds #LetsTalkAboutPain

WHAT PATIENTS WISH DOCTORS KNEW "5 minutes of their day can affect our life for months or years. They're only seeing a small picture into our daily reality. Sometimes symptoms are hard to describe, but that doesn't mean they aren't real. O We are not choosing this, and we would do anything to get better. A little empathy goes a long way. We hope they'll treat us like they'd treat a family member they love." Credit: Chronic Love Club

WHAT PATIENTS WISH DOCTORS KNEW

"5 minutes of their day can affect our life for months or years.

They're only seeing a small picture into our daily reality.

We hope they'll treat us like they'd treat a family member they love."

Credit: Chronic Love Club
#MySeveralWorlds #MyChronicLife

Sitting in my wheelchair in a spring coat on Dec 28, 2025 in Toronto Pearson Airport. Waiting for my best friend to pick me up and bring me and my cats to my parents. My parents are providing food and shelter.

The Toronto Porter who helped get my cats and luggage out to the car. This is what I escaped with. I left 23 years of life in Taiwan with this to show for it

The woman who helped me get out in Taiwan. She checked my cats in and then she checked me in.

It has been two months since I fled my abusive marriage in Taiwan in my manual wheelchair with my cats in cargo. Today is #DisabilityDayOfMourning. Although I do not feel lucky, I know I have my life and my cats. I will never let anyone block access to safety, care & food ever again.
#DDoM2026 #DDom

Sharing our rare disease stories is vital for building community Columnist Kerry Wong explains how reading and hearing about others' experiences inspired her to share her own rare disease story.

Here's one more #RareDiseaseDay column I wrote for Sarcoidosis News - this one from 2024!
🦓🦋
#RareDisease #community #PatientStories #sarcoidosis #ZebraStrong
sarcoidosisnews.com/columns/shar...

A single candle burns in the forefront and a multitude of blurred lights are in the background. Text: Disability Day of Mourning March 1st.

CN: violence
.
.
Today is the Disability Day of Mourning. The disability community will gather to remember disabled victims of filicide – disabled people murdered by their family members or caregivers. https://ow.ly/Y9oG50Yn6ar

#DDofM2026 Autistic Self Advocacy Network (ASAN)

Black and white illustration featuring a forest setting with central hippo like creature, hedgehog in the foreground and birds flying overhead

Illustration from Tove Jansson's book 'The Moomins and the Great Flood' (1945) #Womensart

Chronically Ill Texting Codes IAFU: in a flare-up ATD: at the doctor's TMPTT: too much pain to text ETH: everything hurts NBN: need bathroom now CSU: can't stay upright BF: brain fog DSLN: didn't sleep last night UDA: useless doctor appointment PFD: pain, fatigue, dizzy FCP: f*ck chronic pain Credit: DearFibromyalgia/beth #MySeveralWorlds #ChronicPainSupport #ChronicIllnessHumour

Chronically Ill Texting Codes

IAFU: in a flare-up
ATD: at the doctor's
TMPTT: too much pain to text
ETH: everything hurts
NBN: need bathroom now
CSU: can't stay upright
BF: brain fog
DSLN: didn't sleep last night UDA: useless doctor appt
PFD: pain, fatigue, dizzy
FCP: f*ck chronic pain

‘Silence can be incredibly hurtful’: How to talk to someone about their chronic illness While it may feel impolite to ask after someone’s ill-health, for those living with chronic conditions never being asked can feel ruder still

"Silence can be incredibly hurtful’: How to talk to someone about their #ChronicIllness

While it may feel impolite to ask after someone’s ill-health, for those living with chronic conditions never being asked can feel ruder still."
🔗
www.theguardian.com/lifeandstyle...

Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA.
🔗
buff.ly/3CISx4v

#AnkylosingSpondylitis #nrAxSpA

@asintfed.bsky.social
@gohealio.bsky.social

What doctors wish patients knew about menopause Menopause is often accompanied by discomfort, though symptom severity does vary. Three ob-gyns share how to navigate this transformative period.

What doctors wish patients knew about menopause
“When you have a decrease in estrogen, you can have hot flashes, night sweats, anxiety, other emotional symptoms, insomnia, changes in your sex drive, & a host of symptoms. It's individual to the patient."
🔗
www.ama-assn.org/delivering-c...

Reliving Heartbreak: Life With A Chronic Illness – Living with chronic illness is heartbreaking. Heartbreak that is repeated again and again as its worst moments are replayed over and over.

"The true heartbreak of living with chronic illness is being forced to relive the worst moments of it over and over again." via @serenebutterfly.bsky.social at My Brain Lesion and Me
🔗
Read it: www.brainlesionandme.com/reliving-hea...

#Spoonie #ChronicIllness #ChronicPain #Disability #ChronicLife

@AChVoice The Surprising Thing About Chronic Pain buff.ly/2Lvfo5n I’ve lived w. #ChronicIllness for 20 years & have gone through flares that are so disabling that I imagine this is what hell feels like. IMO, one cannot deal w. #ChronicPain when they’re defeated mentally.

#Inflammation & #BloodClots
"Diseases that cause chronic inflammation can lead to damage to the clotting process which can block blood flow in the veins. Common inflammatory diseases include
Lupus
Cancer
Cystic fibrosis
Asthma
Psoriasis
MS
Diabetes
Infection
IBD"
🔗
thrombosis.org/2024/10/infl...

Recovering self-identity with disability I have thought a lot about self-identity and chronic illness and worked on it with myself for some time with illness. I have been chronically ill since I was young but more so since I was 20 and th…

Recovering self-identity with #disability
chronicallynikki.com/2026/02/27/r...

Story of my life! "HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING After the doctor has given you your options and you've done your own research, the anxiety often remains. Will this treatment help me or harm me? Will it cause a flare or do irreversible damage? When your condition makes you sensitive to medications, you feel like your body sees the list of possible side- effects as a to-do list. Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying." Credit: @strongerthanpots #ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama

Story of my life!

"HAVING TO MAKE MEDICAL DECISIONS ON A FREOUENT BASIS IS OVERWHELMING

Either way it's a risk: you risk getting worse or you risk staying the same, either way it's terrifying."

Credit: @strongerthanpots

#ComplexChronicIllness #MySeveralWorlds #DifficultToTreat #MyMedicalDrama

"Chronic pain is a trip because you have to simultaneously hyper focus on physical discomfort to monitor your health and pain levels while also trying to completely ignore pain in general. I will freak out over a new twinge or sensation of pain because I worry about it being more nerve damage or a new health problem. On the flip side, I actively ignore pains of know origin that don't go above a 5 on the pain scale; sometimes I won't realize something is actually serious until an injury is bleeding all over my carpet or half a broken tooth falls out of my mouth." Credit: @SlyFoxSyndicate

"Chronic pain is a trip because you have to simultaneously hyper focus on physical discomfort to monitor your health & pain levels while trying to ignore pain. I actively ignore pains that don't go above a 5 on the pain scale; sometimes I won't realize something is serious." Credit: @SlyFoxSyndicate

My health has been on fire with several new diagnoses coming through that I simply had no time to chase down on my own by myself. 👉 I knew there was something wrong but did not know how serious it is. This week I started iron infusions along with other treatments. Naturally they are kicking my butt. My fingers are crossed with my eyeballs on the horizon. I hope they help me feel better. Of course I am the patient with ALL the rare side effects. It happens every single time and usually 48 hours in. Meanwhile I keep getting the 'side effects are rare' speeches from pros. Story of my life! Just gotta keep going. 🤷‍♀️ This post from @lupie Linda seems apt for today: EVERY LUPIE'S MEDICATION STORY ✔️ Made me feel worse ✔️ No noticeable effect ✔️ Can't afford it ✔️ Side effects were unbearable ✔️ This helped a little ✔️ Worked until it didn't ✔️ It flared up another condition ✔️ This one's the winner! (So far one is working well.) #MySeveralWorlds

My health has been on fire with several new diagnoses that I had no time to chase down on my own. I knew there was something wrong. I did not know how serious it is. This week I started iron infusions along with other treatments. Of course I am the patient with ALL the rare side effects.

"Morning struggles of a full time #Spoonie I literally just put a pill in my mouth, dropped the other one, and then freaked out cuz I couldn't find the one IN MY MOUTH." Credit, Carrie, #MySeveralWorlds

"Morning struggles of a full time
#Spoonie

I literally just put a pill in my mouth, dropped the other one, and then freaked out cuz I couldn't find the one IN MY MOUTH."

Credit, Carrie, #MySeveralWorlds

What's it Like to Live with a Heart Rhythm Disorder? I live with PSVT — a heart rhythm disorder/arrhythmia. Read about my personal experiences living with this heart condition, and get tips to cope.

I got heart palpitations every 3-4 days. I had many trips to ER. It isn’t dangerous within normal range, but I was unable to pay attention to anything else. After every rhythm reset I felt fatigue wash over me. I stopped working full-time. @achronicvoice.com
🔗
www.achronicvoice.com/2018/10/04/h...

Some #MondayMotivation as I head into the hospital for cardiac testing and my first infusion. This is another Hell Week for medical testing. To date, all the testing that I've done here in Canada has shown that my health is actually worse than it was than they thought in Taiwan. "Sunflowers a reminder to be strong, stand tall, and always find the light." ~ Anonymous #MondayMotivation #ChronicTruths #KeepOnGoing #MySeveralWorlds

#MondayMotivation as I head to hospital for cardiac testing & my first infusion. All the testing I've done in Canada has shown my health is worse than it was than they thought in Taiwan.

"Sunflowers a reminder to be strong, stand tall, and always find the light."

#KeepOnGoing #MySeveralWorlds

Happiness & #ChronicPain CAN co-exist buff.ly/2CEyLpE
"For years I have been escaping, fighting, denying & begging w pain. They worked for a time but aren’t long-term solutions. I’ve realised I need to accept that pain will always be a part of my life. Via @achronicvoice.com

Disabled people, self management, and 'being controlling' Disabled people are often seen as demanding and controlling - here I look at an example of why this might be, and what is really going on.

"Disabled people & 'being controlling'
"When you interact w. a disabled person who is 'being demanding' - look again. Maybe all they are asking for is basics that will allow them to function, to be part of society, & to not get worse."
🔗
www.stickmancommunications.co.uk/post/disable...

#disability

It is estimated that nearly 10 million adults in #Taiwan aged 18+ are affected by #pain. The 3 most common types reported are muscle soreness, headache & joint pain, according to the latest survey on pain perception & behaviors in Taiwan. #ChronicPain
🔗
english.news.cn/20240904/ad8...