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Carrie Marshall - MySeveralWorlds.com

@myseveralworlds.com
480 followers 252 following 2K posts

✒️ I write about life with severe #ChronicPain related to #SpA #PsA #MEcfs #fibromyalgia #APS 🦋 MySeveralWorlds.com 👩‍🦼 #DisabilityAdvocate 🤝 Team Fibro & Spondylitis 🎨 DISABLED ARTIST 🌴 linktr.ee/myseveralworlds

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Reposted by Carrie Marshall - MySeveralWorlds.com
Rhiann Johns @serenebutterfly.bsky.social · 9h
Finished #reading #TheAstralLibrary by Kate Quinn and this #quote from it really spoke to be as someone who id a self-confessed #bookworm: ‘Can a bookworm ever really call herself alone when she’s surrounded by books?’
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 4h
I am surprised by how often the 1-10 pain scale is used here. I'm glad to hear so many do not like this scale! How would you rate your pain today? For my last post this month, I'm sharing "A more realistic chronic pain scale by @PINKYANDTHEPAIN #PAM2026 #PainAwarenessMonth #MySeveralWorlds
We've had a lot of talk about the pain scale here on this page during #PainAwarenessMonth. 

I, too, was very surprised by how often the 1 to 10 pain scale is used here in North America. And I've been glad to hear from so many of you who have said that you also do not like this scale.

❓How would you rate your pain today? 
 
For my last post this month, I'm sharing "A more realistic chronic pain scale by @PINKYANDTHEPAIN

0-2
Really?! I didn't know this even existed 

3-4 
My normal every day / lower normal. Can almost function as a normal person and very easy to hide.

5-6
ANNOYING. Also my normal on the medium days or after a busy day. Can normally continue every day things and can be hidden pretty well.

7-9
ANGRY. IRRITABLE. Can be my background during my high pain days. Often a warning of what is to come and when the mask starts to slip. Should plan to be home or close to home. Will be around close friends who understand only.

10-12
NOPE. Intermittent crying. This is high background with multiple spasms/shocks an hour. Will need to go home now and only be around those closest to me. Probably in bed/resting.

13+
NO WORDS TO DESCRIBE. UNCONTROLLED. Inconsolable or silent. Unable to move. Should probably see a doctor but I never do it. It will pass.

#PAM2026 #LetsTalkAboutPain  #MySeveralWorlds
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Reposted by Carrie Marshall - MySeveralWorlds.com
Princess in the Tower @apainprincess.bsky.social · 29/09/2026
“Never in my life did I think that taking a shower would actually be hard. It’s an exhausting activity that usually requires me to sit or lie down for a while afterward to recover.” Challenging Daily Decisions buff.ly/4d11C5j #PainAwarenessMonth #Disability #ChronicIllness
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 16h
I made this graphic years ago to help people visualize life with #ChronicPain. It reflects conditions relevant to my own medical history — not every painful condition that exists. Some pain ends. Chronic pain can last for decades. #PainAwarenessMonth #Fibromyalgia #AxSpA #CRPS #MECFS
Graphic titled “The McGill Pain Index” showing a vertical pain scale from 0 to 50. Conditions listed include sprain 14, fracture and arthritis 18, toothache 19, post-shingles nerve pain 22, non-terminal cancer 26, chronic back pain 28, chronic migraine 29, fibromyalgia 30, ankylosing spondylitis and psoriatic arthritis 32, childbirth 32–36, finger or toe amputation 39, and CRPS 46. The image includes black human silhouettes and MySeveralWorlds.com branding.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 29/09/2026
"Skin-related manifestations are common & may be the 1st signs of #APS. 40% of APS pts who hv #cutaneous manifestations go on to develop multisystemic #thrombotic events which underscores the need to be extra vigilant" buff.ly/XofExpO @achronicvoice.com #AntiphospholipidSyndrome
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How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)
How does Antiphospholipid Syndrome affect the body? Whilst APS is a blood clotting disorder, it is also a systemic autoimmune disease.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 28/09/2026
How does it make you feel when a pain specialist questions how you talk about your pain? Have you experienced problems with doctors telling you how you should and shouldn't talk about pain? We'd love to hear about your experiences for #PainAwarenessMonth #PAM2026 #DontPunishPain #MySeveralWorlds
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 27/09/2026
"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...
theguardian.com
‘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
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 27/09/2026
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. Via @achronicvoice.com
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Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness
When we think of pain, physical pain often comes to mind first. But sometimes, chronic pain isn't the worst part about chronic illness.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 27/09/2026
"If you don't have to factor in losing 40% of your day in exchange for A Thing, you have no right to comment on my ability to do A Thing. Credit: Women With Chronic lllness #PainAwarenessMonth #PAM2026 #MySeveralWorlds #ArthritisAwarenessMonth #MigraineAwarenessWeek
"What abled people dont understand is that even if a disabled person manages to do A Thing, there is a cost for A Thing

We had a family member hours today visit for 3 hours. I collapsed from pain and fatigue when they left and slept for 10 hours straight.

If you don't have to factor in losing 40% of your day in exchange for A Thing, you have no right to comment
on my ability to do A Thing.

Credit: Women With Chronic lllness

#PainAwarenessMonth #PAM2026
#MySeveralWorlds  #ArthritisAwarenessMonth
#MigraineAwarenessWeek
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 27/09/2026
"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
brainlesionandme.com
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.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 27/09/2026
We rarely see #fibromyalgia in the news here: #Singapore "No two patients are the same. Clara likened her #pain to numbness crawling from her neck. Daisy struggles with #BrainFog. Jin Jie endures a deep-seated ache. Rina, a stabbing sensation. www.channelnewsasia.com/cna-insider/...
channelnewsasia.com
Invisible, incurable, constantly in pain: This is what living with fibromyalgia is like
Imagine doctors insisting that you are fine, when your body is engulfed in pain. Four fibromyalgia patients tell CNA Insider about their struggles with this invisible illness and how they draw strengt...
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 27/09/2026
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 told @gohealio.bsky.social
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Name changes for Sjögren’s, axial spondyloarthritis ‘a big deal’ for researchers, patients
“Ankylosing spondylitis”? “Sjögren’s syndrome”? These terms may soon take on an antiquated feel not unlike “shell shock” or “consumption,” as both...
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 26/09/2026
NEW: What happens when a disabled person’s need for assistance is seen as dependence? When the floor they can’t mop becomes more visible than the biz they’re running? The Invisible Weight of a Disabled Wife 🔗 www.myseveralworlds.com/2026/09/10/t... #Ableism #MySeveralWorlds #DisabilityAndMarriage
What happens when a disabled person’s need for physical assistance gets mistaken for dependence?

When the floor they can’t mop becomes more visible than the business they’re running. When the groceries they can’t carry matter more than everything they carry that no one can see.

This is a deeply personal story, but it’s also about something much bigger: ableism, invisible labour, and the dangerous assumption that needing help means being helpless.

And yes, it starts with a mop. The actual fucking mop. 🧹

The Invisible Weight of a Disabled Wife
🔗
https://www.myseveralworlds.com/2026/09/10/the-invisible-weight-of-a-disabled-wife/

#Ableism #MySeveralWorlds  #DisabledWomen #InvisibleLabour #DisabilityAdvocacy #DisabilityAndMarriage 

Pinterest
What happens when a disabled person’s need for physical assistance gets mistaken for dependence?

When the floor they can’t mop becomes more visible than the business they’re running. When the groceries they can’t carry matter more than everything they carry that no one can see.

This is a deeply personal story, but it’s also about something much bigger: ableism, invisible labour, and the dangerous assumption that needing help means being helpless. And yes, it starts with a mop. 🧹
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Reposted by Carrie Marshall - MySeveralWorlds.com
A Chronic Voice @achronicvoice.com · 24/09/2026
"bad news is that once it happens, #inflammation makes it easier for new #cysts to form! Inflammatory diseases like #PsoriaticArthritis, #lupus & [RA] increase yr risk of getting #BakersCysts bcos [they] cause..serious joint swelling.": buff.ly/Ew2XVM0 by @myseveralworlds.com #RA #PsA #ChronicPain
myseveralworlds.com
Baker’s Cyst: My Tale of This Painful Aspect of Psoriatic Arthritis
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Reposted by Carrie Marshall - MySeveralWorlds.com
Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
"The terrible irony is that this became one of the central questions of my life: When is a person #disabled enough to need help?" www.myseveralworlds.com/2026/08/25/c... via @myseveralworlds.com #ChronicIllness #ChronicallyIll #Disability #NEISVoid
myseveralworlds.com
Bot Verification
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Reposted by Carrie Marshall - MySeveralWorlds.com
A Chronic Voice @achronicvoice.com · 26/09/2026
"Don’t assume that your #doctor knows or remembers how long you’ve been in pain. If you’ve been experiencing pain for a year, a month, or a decade, your doc needs to be reminded & remind them regularly": buff.ly/HhAqDhu by @myseveralworlds.com #ChronicPain #InvisibleIllness
myseveralworlds.com
How Do I Describe Chronic Pain to My Doctor?
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 26/09/2026
My little dwarf with a pick axe has been very active these past two months. I am still averaging 2-4 health appointments a week. This results in HIP Days. (High Impact Pain Days) It's my way of using some humor for pain. #PainAwarenessMonth #PAM2026 #MySeveralWorlds #ChronicPainIs #LifeWithPain
My little dwarf with a pick axe has been very active these past two months. I am still averaging 2-4 health appointments a week. 

Next week I have five appointments that conclude with an MRI next Saturday. The following week begins with a bang and another full appointment with my GP about the ER fiasco.

So I'm stressed out from doing too much and that results in HIP Days. (High Impact Pain Days)

This is my way of using some humor for pain.

#PainAwarenessMonth #PAM2026 #MySeveralWorlds #ChronicPainIs #LifeWithPain
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Reposted by Carrie Marshall - MySeveralWorlds.com
fibrocanada.bsky.social @fibrocanada.bsky.social · 21/09/2026
💜 This World Arthritis Day, let’s make space for joy! Join @capa-aca.bsky.social , @Psoriasis Canada, Fibromyalgia Association Canada & @Lupus Ontario to explore ways to keep doing what matters. 🗓️ Oct 15 | 12–1 PM ET | Virtual 🇫🇷 French captions available Register: us02web.zoom.us/meeting/regi...
https://us02web.zoom.us/meeting/register/CDKgtby6TEWMLF9s34xgfw#/registration
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 25/09/2026
‘Bouncing back’ is a myth – #resilience means integrating hard experiences into your life story, not ignoring them. Loss, #trauma and #illness often bring the same wrenching questions of identity and the painful uncertainty of what comes next. 🔗 theconversation.com/bouncing-bac...
theconversation.com
‘Bouncing back’ is a myth – resilience means integrating hard experiences into your life story, not ignoring them
Push through, stay strong, fight back – people often think of resilience as being tough and having grit. But research suggests it’s more about acknowledging the scars as you continue to move forward.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 25/09/2026
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...
english.news.cn
Half of the surveyed in Taiwan experience pain weekly
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 25/09/2026
Disabled people & 'being controlling' "When you interact w. a disabled person who is 'being demanding' - look again. Maybe all they are asking for is the basics that will allow them to function, to be part of society, & to not get worse. 🔗 www.stickmancommunications.co.uk/post/disable... #disability
stickmancommunications.co.uk
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.
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Reposted by Carrie Marshall - MySeveralWorlds.com
Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
Thank you so much @achronicvoice.com for taking the time to share my blog post on the reality of living with #fatigue another one of the many symptoms that accompany #ChronicIllness. It’s very much appreciated! 🫶
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 25/09/2026
DID YOU KNOW? The National Center for Chronic Disease Prevention & Health Promotion states that people with fibromyalgia are 3.4 times more likely to develop more depression compared to people who do not have fibromyalgia. ~ #MySeveralWorlds #PainAwarenessMonth #FibroNerds #TeamFibro #SupportFibro
DID YOU KNOW?

"The National Center for Chronic Disease Prevention and Health Promotion states that people with fibromyalgia are 3.4 times more likely to develop more depression compared to people who do not have fibromyalgia. "

Credit: Carrie, My Several Worlds - Stories of Disability, Illness & Belonging 


#PAM2026  #PainAwarenessMonth  #MySeveralWorlds #FibroNerds #TeamFibro #SupportFibro
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 24/09/2026
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. Via @achronicvoice.com
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Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness
When we think of pain, physical pain often comes to mind first. But sometimes, chronic pain isn't the worst part about chronic illness.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 24/09/2026
Fibromyalgia is known for having more than 200 symptoms! This is why it is known as one of the most painful medical conditions to have. This word cloud is a list of things I experience daily because of fibro. 🔗 www.myseveralworlds.com/fibromyalgia/ #MySeveralWorlds #PainAwarenessMonth #PAM2026
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 23/09/2026
Things to Do On Bed Rest: Education #Advocacy & Volunteering ~ @achronicvoice.bsky.social "Even if you aren’t a blogger, you can help. Reading & resharing blog posts from other #ChronicIllness & #disabled bloggers helps raise awareness." 🔗 buff.ly/3OGUdPd #StrongerTogether #BloggingCommunity
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Useful Things to Do While on Bed Rest After Surgery: Education, Advocacy & Volunteering (Part 5/5)
A list of useful things to do while on bed rest after surgery to feel truly productive. Part of my knee injury and year long recovery series.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 23/09/2026
Chronic noise exposure may do more than harm your hearing. New research linked repeated loud sound to dopamine neuron death and movement issues in mice, offering insight into how environmental noise could contribute to Parkinson’s disease. Read more: bit.ly/3Xhya5f
bit.ly
Chronic Noise Exposure Led to Parkinson's Disease Symptoms in Mice | The Scientist
Noise as loud as 85 to 100 decibels over time led to irreversible motor defects and loss of dopamine neurons in a mouse model of pre-symptomatic Parkinson’s disease.
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Reposted by Carrie Marshall - MySeveralWorlds.com
Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
Thank you so much @achronicvoice.com for sharing my blog post on the life lessons I’ve learned whilst #cruising and how it relates to my life living with #ChronicIllness and #disability. It’s much appreciated! 🫶
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 23/09/2026
It happened to me in ER in Sept despite my pharmacy list. "I can't treat you, or give you any pain medication because that's not my field. But, I'm going to refer you to five other doctors who won't help you either." Credit: Unknown #PainAwarenessMonth #PAM2026 #MySeveralWorlds #DontPunishPain
This is what happened to me on Sept 5th when I forgot my meds at home at 3am and ended up being in ER for 24 hours. For the first five hours I was refused completely despite having my legit pharmacy med list on me with my doctor's name and only needing one tablet. 🤦

There were no referrals. I was told to "wait my turn" 🤷‍♀️ while hemorraging, and triaged as CTAS 3 (urgent) with 10/10 acute pain. 

"| can't treat you, or give you any pain medication because that's not my field. But, I'm going to refer you to five other doctors who won't help you either."

Credit: Unknown

#PainAwarenessMonth #PAM2026 #MySeveralWorlds #DontPunishPain
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 23/09/2026
My #AxSpA Story for @spondylitis When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. 🔗 spondylitis.org/patient-stor... #ArthritisAwarenessMonth
spondylitis.org
Carrie Kellenberger
I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soo...
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 22/09/2026
Only 62% of Canadians with disabilities aged 25 to 64 have jobs, compared to 78% of Canadians without disabilities. Persons with disabilities who are working often have lower paying jobs that have less stability, fewer benefits, and limited chances for career growth. 🔗 www.canada.ca/en/employmen...
canada.ca
Employment Strategy for Canadians with disabilities - Canada.ca
ESDC programs for persons with disabilities, employers, and those helping to make workplaces more inclusive.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 22/09/2026
How our noisy world is seriously damaging our health "In Barcelona there are an estimated 300 #HeartAttacks and 30 deaths a year just from traffic noise, according to researcher Dr Maria Foraster, who has reviewed evidence on noise for the WHO." 🔗 www.bbc.com/news/article...
bbc.com
Noise: The invisible killer in all our lives
The BBC's James Gallagher investigates the invisible killer all around us.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 22/09/2026
@achronicvoice.com writes about her life with chronic illness a nd #disability "To provide insight into life with #ChronicIllness is to put your vulnerabilities on public display. It means showing fragments of a broken body, and wounds that will never heal." Read it: buff.ly/3C3SVZ7
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Why I Write, Even Though it Makes Me Uncomfortable
Revealing so much about my private life and chronic illnesses through my writing actually makes me uncomfortable — but here's why I write anyway.
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Reposted by Carrie Marshall - MySeveralWorlds.com
Princess in the Tower @apainprincess.bsky.social · 21/09/2026
“Those of us with #ChronicPain wake up every day with pain. This automatically causes a problem with the standard pain scale… Some of us never have a zero… People who don’t have chronic pain often have a hard time understanding that.” buff.ly/DV4J65r #PainAwarenessMonth
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 22/09/2026
For #ArthritisAwarenessMonth & #PainAwarenessMonth Today's graphic is for BASDAI: Bath #AnkylosingSpondylitis Disease Activity Score. BASDAI defines disease activity in a person with AS. Visit the Spondylitis Association of America to calculate your score. #Spondyloarthritis #Spondylitis #PAM2026
For #ArthritisAwarenessMonth and #PainAwarenessMonth...

Today's graphic is for BASDAI: Bath #AnkylosingSpondylitis Disease Activity Score with Spondylitis Association of America.

If you're not familiar with this measurement tool, visit their website. I'll pop the link in the comments so you can calculate your BASDAI score.

BASDAI Score Calculator: Ankylosing Spondylitis (AS)
Measuring Disease Activity

Please indicate your level of ability with each of the following activities during the past week.

BASDAI defines disease activity in a person with AS.

It consists of six 10cm horizontal VAS to measure, including: 
*fatigue
*spinal pain
*duration of morning stiffness
*severity of morning stiffness
*peripheral joint swelling
*localized tenderness

The scale is from 0 to 10. 

A BASDAI score of >4/10 means your disease is active. Anything above four means your disease is active. 

If you test below four, your disease is considered under control. The higher you score, the worse your disease activity is. 

The goal of BASDAI is to define disease activity in a patient with axSpA. It can be done in two minutes. It’s effective at letting doctors know how active your disease is.

Want to learn about other measurement tools? 

Follow me and the SAA did more info about life with #Spondyloarthritis.

#Spondylitis #SpondyWhat #PAM2026
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 22/09/2026
“The whole thought process of a #chronicallyill person is vastly different from a “healthy” person… they have no idea what it’s like—there may be 20 or more decisions you need to process before you can walk out your door.” 🔗 buff.ly/46vXYyv @KimberlyJPenix #Spoonie
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Chronic Illness: You Don't Get It Until You Get It
I think one of the hardest challenges of having a chronic illness is being understood. No matter how loving and supportive and genuinely concerned a person is, they simply cannot understand if they ar...
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 21/09/2026
Pain scales that may be appropriate to most don't capture the experience of many trauma survivors esp those who experience significant dissociation. Evaluating their needs based on normative pain scales can underestimate their need for support & relief. @drdoylesays.bsky.social #PainAwarenessMonth
Pain scales that may be appropriate to most people don't capture the experience of many trauma survivors especially those who experience significant dissociation. Evaľuating their needs based on normative pain scales can drastically underestimate their need for support & relief."

Credit: Dr. Glenn Patrick Doyle (Protect this man at all costs. You can find him under @drdoylesays on other platforms.)

#PainAwarenessMonth #PAM2026 #LetsTalkAboutPain  #MySeveralWorlds
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 20/09/2026
“A lot of people think that #RheumatoidArthritis is just bad #arthritis, and it’s not. It’s systemic. It can attack your lungs and kidneys and you can get vasculitis. The chances of going into remission are very low, probably less than 5%." 🔗 www.ama-assn.org/delivering-c...
ama-assn.org
What doctors want patients to know about rheumatoid arthritis
Rheumatoid arthritis is a debilitating disease characterized by painful inflammation and joint deformities. Two rheumatologists share more about RA.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 20/09/2026
"When I think about what will be presented at healthcare conferences, I am frustrated. I don’t want an app to tell me how to track my fitness goal, but that’s what is popular. Digital med reminders are not what I need when I’m poor & can’t afford meds."  🔗 myheartsisters.org/2014/07/13/e...
myheartsisters.org
Erin Gilmer: “Us” vs “them”: the under-served patient speaks up
“High-tech digital medication reminders are not what I need when I’m poor and can’t afford medicine.” If big health conferences are going to host “experts” speak…
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 20/09/2026
"I presumed I was fine since I did not experience pain, & continued to eat, drink & play sports as usual until I developed multiple #DVTs & a #PulmonaryEmbolism that nearly cost me my life. It also activated #AutoimmuneDiseases." 🔗 www.achronicvoice.com/antiphosphol... #APS @achronicvoice.com
achronicvoice.com
Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient
A comprehensive Antiphospholipid Syndrome diagnosis resource guide from A to Z. Written by an APS patient with over 20 years of lived experiences.
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Princess in the Tower @apainprincess.bsky.social · 20/09/2026
“People with #ChronicPain learn to function while in enough pain to send a person to the ER… They learn to act relatively normal because it makes most uncomfortable to see someone in pain… that day they were stuck in bed, in tears from intolerable pain.” buff.ly/3X7OBAC #PainAwarenessMonth
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 20/09/2026
How we measure pain in a culture sensitive way is an essential step in research. Most pain measurements were developed in Western cultures. (McGill Pain Questionnaire) Most words were suitable for Chinese populations. Some were difficult to translate. 🔗 buff.ly/JmNNvE7 #PainAwarenessMonth #PAM2026
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Development of a Culture-Sensitive Pain Measurement | JPR | Dove Medical Press
To develop a culturally sensitive Chronic Pain Cognition Scale for Chinese-/Chinese dialect-speaking populations & investigate its psychometric properties.
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 20/09/2026
I admit that I don't like the idea of "making" anyone suffer just to prove point however a few seconds might be interesting! It could be like those birth shocker videos that are going around that show men what women go through. #PainAwarenessMonth #PAM2026 #MySeveralWorlds #LetsTalkAboutPain
I admit that I don't like the idea of "making" anyone suffer just to prove point however a few seconds might be interesting! It could be like those birth shocker videos that are going around that show men what women go through. 

"I wish they could invent a medical device that temporarily transfers your symptoms and pain to the doctor treating you and it worked like a shock collar. "I think light exercise would" and then bam they're rolling around the floor clutching their stomach in agony and dry heaving."

Credit: byjove The Aesthetic
Indie Hipster

#PainAwarenessMonth #PAM2026 #MySeveralWorlds 
#ChronicMeme #LetsTalkAboutPain
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Reposted by Carrie Marshall - MySeveralWorlds.com
Rhiann Johns @serenebutterfly.bsky.social · 19/09/2026
Thank you so much @achronicvoice.com for taking the time to share my blog post on the reality of living with a #DynamicDisability. It’s much appreciated! 🫶
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 19/09/2026
For #ArthritisAwarenessMonthi, an AxSpA signs & symptoms list. It is a complex disease. Its severity & progression can vary greatly among. This list is not exhaustive. Always discuss your symptoms with your medical provider. #AnkylosingSpondylitis #MySeveralWorlds #PAM2026 #PainAwarenessMonth
For #ArthritisAwarenessMonth I'm sharing a short AxSpA signs and symptoms list.  

#AxSpA is a complex disease. Its severity and progression can vary greatly among individuals.

✔️ Has your pain started before the age of 45? 
✔️ Has your back pain lasted from more than 3 months? 
✔️ Does your pain get worse with rest? 
✔️ Do you have pain in your hips and buttocks?
✔️ Do you wake up from pain at night?
✔️ Are you stiff for more than 30 minutes in the morning?

This list is not exhaustive. Always discuss your symptoms with your medical provider. 

#FiercelyFightingArthritis #AnkylosingSpondylitis 
#MySeveralWorlds #SpondyWhat #PAM2026 #PainAwarenessMonth
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 18/09/2026
#ChronicPain affects every aspect of your life It has lasting effects on your body It limits your ability to work & earn money Chronic pain changes your personality, confidence & relationships It makes you fearful & scared It requires a superhuman power of pain tolerance © #MySeveralWorlds #PAM2026
8 Ways Chronic Pain Changes You

Chronic pain affects every aspect of your day to day life

Chronic pain has lasting effects on your body

Chronic pain limits your ability to work and earn money

Chronic pain changes your personality

Chronic pain can affect your confidence

Chronic pain can change your relationships with others

Chronic pain makes you
fearful and scared

Living with chronic pain requires a superhuman power of pain tolerance

Credit: Carrie, My Several Worlds

Read more in the comments ⬇️

#PainAwarenessMonth #PAM2026 #LetsTalkAboutPain
#MySeveralWorlds
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 17/09/2026
17 long years of waking up in pain & feeling like someone took a meat tenderizer to my body. I don't know how we get through other than through willpower. If I didn't have basic pain treatment options, I don't know where I'd be now. #PainAwarenessMonth #LifeWithPain #PAM2026 #MySeveralWorlds
LIFE WITH CHRONIC PAIN 

17 long years of waking up in pain and feeling like someone took a meat tenderizer to my whole body. I don't know how we get through this day after day other than through willpower. If I didn't have basic pain treatment options, I don't know where I'd be now.

LEARN MORE AT
My Several Worlds - Stories of Disability, Illness & Belonging 

#PainAwarenessMonth #LifeWithPain #PAM2026
#MySeveralWorlds
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Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 16/09/2026
I ordered a manual blood pressure cuff after my 24 hour ER stay. Even with paramedics using their manual cuff, it still resulted in being unable to drive/lift for 2 weeks. This is a reasonable accommodation for some disabled people. I guess disabled folks are expected to bring their own equipment. 🤷‍♀️
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Reposted by Carrie Marshall - MySeveralWorlds.com
Dr. Glenn Patrick Doyle @drdoylesays.bsky.social · 16/09/2026
The shame experienced by CPTSD survivors who were victimized as adults, whether or not they were also victimized as children, leads many to not seek support or acknowledge what happened. But you deserve exactly as much sympathy, support & grace as any other trauma survivor.
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Reposted by Carrie Marshall - MySeveralWorlds.com
Adam @abrokenbattery.bsky.social · 16/09/2026
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
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