"Nothing happened. My immune system just woke up and chose violence. Again." Credit: Postwil #MySeveralWorlds #AutoimmuneDisease #ChronicInflammation

A quick update that my handle has changed to @myseveralworlds.com. (Hurray!) After a long eight month battle, I just got into #ODSP. It feels very strange to have been recognized as formally and permanently disabled by the Taiwan govt AND the Canadian govt. #DisabilityAwareness

In Their Own Words: #MECFS & #Fibromyalgia Patients Describe Their Symptoms @cortjohnson.bsky.social "I would not wish this illness on my worst enemy (if I had one). Sometimes I wish the naysayers could live in our bodies." 🔗 www.healthrising.org/forums/resou... #MEAwareness #FibromyalgiaAwareness

In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms

I would not wish this illness on my worst enemy (if I had one), but sometimes I wish the naysayers could live in our bodies for a few days.. The symptoms are taken from a thread on the Health Rising ...

healthrising.org

When you live with chronic #anxiety, sometimes you just want to switch your brain off. Read what anxiety and #PanicAttacksfeel like here, and how friends can be the saving grace 🔗 buff.ly/37pXrBD Via @achronicvoice.com

The Savagery of Panic Attacks & The Saving Grace of Internet Friends

Anxiety and panic attacks have been plaguing me with the lockdown. But a new pup and internet friends with chronic illness have sustained me.

buff.ly

© Diane Hoeptner. 'Cat in the Garden.' Oil on panel, 2020. 8 × 6 inches.

hoping your body chills the hell out and lets you live for once, you beautiful disaster. Credit: @dear_chronic_pain #MySeveralWorlds #ChronicIllnessAwareness

A light bump, pinch or punch can add a new bruise to the endless collection. I’m often surprised to find a new one hidden somewhere on my body" 🔗 www.achronicvoice.com/2021/07/14/b... @AChVoice #AntiphospholipidSyndrome #PulmonaryEmbolism #ChronicPain #APS #Dazzle4Rare

12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)

Here is some visible evidence of invisible illness — photos, signs and symptoms from my personal life with chronic illness.

achronicvoice.com

HYPERREACTIVE BRAIN NETWORK MAY BE CAUSE OF CHRONIC PAIN IN FIBROMYALGIA Hypersensitivity in #fibromyalgia isn't the same things as being "too sensitive" in the way people usually mean when they throw that phrase around. @FibromyalgiaDiary #MySeveralWorlds #FibromyalgiaAwareness #ChronicPain

Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.” Pang is 25. He has #AnkylosingSpondylitis. We have many similar stories in #Taiwan with 'Who gets a disability seat?' 🔗 www.channelnewsasia.com/cna-insider/...

They’re young, they look healthy, but they need a seat on the train. This is why

These young adults suffer from autoimmune diseases whose symptoms are not often visible, leading to misconceptions and judgement. How do they navigate work, relationships and life in general while end...

channelnewsasia.com

My #insomnia was diagnosed in uni. "Primary insomnia is a type of chronic insomnia as defined by the ICSD-III. It tends to recur for many years throughout a person’s life. This type of insomnia is usually idiopathic... It can be impacted by stress." 🔗 www.psychiatrictimes.com/view/primary...

Primary Insomnia: A Lifelong Problem | Psychiatric Times

When provided with an array of treatment options, patients tend to feel a sense of ownership by playing a role in their care.

psychiatrictimes.com

"There is a severe shortage of pain specialists with approximately 30,000 Americans in pain for every board certified pain specialist. This shortage is caused by a difficult path to specializing in pain treatment plus negative public scrutiny." 🔗 www.practicalpainmanagement.com/resources/et...

Can I Call Myself a “Pain Specialist?”

Who defines the role of pain specialists? Inside the legal requirements for practitioners.

practicalpainmanagement.com

"Metaphors are keys for opening the doors to understanding, for illustrating concepts that the average person is able to relate to. Despite living w #ChronicIllness for 20+ years, I realise that there is still so much I don’t know about."  🔗 www.achronicvoice.com/2016/04/11/q... @achronicvoice.com

A Quarterly Reflection: 12 Important Life Lessons I’ve Learned

I was surprised to find that I have learned many important life lessons from writing and blogging — even when I had only started it for 4 months.

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I smile through the pain…nausea…exhaustion…I have really bad days and those far outnumber the good. They can be absolutely awful… I’d give anything for a cure but since that’s not reality now—I play the hand I was dealt.” 🔗 buff.ly/3vPhveX #CRPS via @apainprincess.bsky.social

The Lessons I've Learned From CRPS That I Don't Regret

"Surprisingly, there are upsides to invisible illnesses."

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#ChronicPain & #MentalHealth are intricately interwoven. Here are just 5 ways life w/ pain can detrimentally affect mental #wellbeing. 🔗 invisiblyme.com/chronicpain-... Via @invisiblyme.bsky.social #Spoonie #InvisibleIllness

Chronic Pain & Mental Health : 5 Detrimental Effects

Chronic pain & mental health are intricately interwoven. Here are just 5 ways life with pain can detrimentally affect our mental wellbeing.

invisiblyme.com

Was just thinking last night that my labs must be climbing as it's back! Signs of #Inflammation ✔️ Swollen lymph nodes ✔️ Low energy ✔️ Skin inflammation ✔️ Altered mucus secretion ✔️ Aches, joint pain ✔️ Brain fog ✔️ Feeling hot ✔️ Poor memory ✔️ Fatigue Unknown #MySeveralWorlds #AxSpA #PsoriaticArthritis

“If you have someone in your life who struggles with an #invisibleillness just remember they probably do their best to look or act ‘normal’… Even simple things can set us back for the rest of the day, several days [or] sometimes even for weeks.” https://buff.ly/LXFELL3

Chronic Illness is just "here's a referral to get another referral to get another referral to get another referral to get another referral” until you get medical fatigue. Credit: MyBodylsTryingToKillMe #MySeveralWorlds #ChronicIllnessAwareness #MedicalBurnout

"It is encouraging to see more novels about chronic illness and disability on our bookshelves." www.brainlesionandme.com/6-novels-abo... #ChronicIllness #ChronicPain #Disability #ChronicLife

6 Novels That Get Chronic Illness Right –

In this, post I share 6 novels about chronic illness that feature auhentic and relatable chronically ill characters

brainlesionandme.com

8/8 #SevereME Day. Here are some of my triggers 💙 Being around too many people 💙 Leaving my house for more than two hours 💙 Hospital appts 💙 Bright lights 💙 Emotional distress ME is a genetic disease. It deserves better research and funding. @openmedf.bsky.social @meactnet.bsky.social

So I need insurance companies to stop playing this game with people's lives You can't suddenly stop covering a very expensive and life-changing medication that a person has been on for years, where it's been documented by their doctor that it works for them

Call Me Maybe@sousleradar.bsky.social · last wk.

Send all the good vibes to BCBS, my rheumatologist is putting in an emergency request for them to cover Orencia, which worked well until they stopped paying for it. I’m out of options completely otherwise. I’ve had RA for 11 years and I’ve exhausted every single drug option.

Thank you so much @thethrivingspoonie.com for taking the time to share my blog post on the reality of living with a #DynamicDisability. It’s very much appreciated! 🫶

April Smith | The Thriving Spoonie@thethrivingspoonie.com · 6mo ago

Some #disabilities aren’t consistent—and that unpredictability comes with its own set of challenges. This post unpacks what it really means to live in a dynamic, ever-changing body. buff.ly/qzGvmI9 #ChronicIllness

The Freedom to Move with #Spondylitis. The last time I wrote for @spondylitis I was testing an exoskeleton. Now I’m cruising in a #RobooterX40. It's time to update the #arthritis community on the pros of using a #PowerWheelchair 🔗 spondylitis.org/patient-stor... #MySeveralWorlds

The Freedom to Move with Spondylitis

Resilience and conviction—being your own advocate—aren’t unique traits, but for those of us navigating health challenges, they’re a way of life. We’re fighters. And that’s something to be proud of, wh...

spondylitis.org

Things I Wish I Could Say to Every Doctor Who Dismissed Me You didn't see the panic in my chest before every appt. You didn't see the flare that hit after each visit. You taught me what #MedicalGaslighting feels like. You also taught me to fight. @myhappycrps #MySeveralWorlds #MedicalTrauma

"Part of what makes medical PTSD so painful for people experiencing chronic or complicated medical conditions is being at the mercy of doctors or others who often don't understand or believe what they are struggling with every day." ❤️ @drdoylesays.bsky.social #PTSD #MySeveralWorlds #MedicalPTSD

The Loneliness Cycle of Chronic Pain You stop talking about it • You feel like a burden You start isolating The loneliness makes it worse • Emotional pain deepens physical pain • Stress & sadness amplify symptoms You feel misunderstood @dc.metro.therapy #MySeveralWorlds #ChronicPainAwareness

"#Actions speak louder than words. Where are you focusing your time and energy, and 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, then?": buff.ly/YnTDkIM #SelfIdentity #ChronicIllness @achronicvoice.com

Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth

The loss of identity with chronic illness is an inevitable trauma experienced with a new diagnosis. Here's how to regain your self-worth.

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An oldie, but a goodie - by me! "Why you should never offer health advice... Someone's health... And what you know if it." #UnsolicitedAdvice #MySeveralWorlds #ChronicIllnessAwareness

Dressing for diseases that change your body shape often 🔗 rheumatoidarthritis.net/living/choos...

My Dressing Do's and Don'ts with RA

How I choose comfortable clothing.

rheumatoidarthritis.net