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Disability And Its Hidden Anger: This Body Betrays Me –

Rhiann Johns @serenebutterfly.bsky.social · 2d

Thank you so much @achronicvoice.com for sharing my deeply personal essay on how I feel afraid and unable to trust my #disabled body and the #anger that comes from that 🫶

A Chronic Voice @achronicvoice.com · 8d

"When I do speak of my #anger, people flinch. They want to hear a story of #acceptance & peace, not the rage & discontent inside me. But I want both peace & acceptance; I fight for it, but my #body won’t let me have it.": buff.ly/22JhJu4

by @serenebutterfly.bsky.social
#ChronicPain #disability

An exploration of living with disability, where anger is both a shield and a source of grief and how it feels to have a body that betrays you

a woman sits on the ground writing in a notebook with a pen

Rhiann Johns @serenebutterfly.bsky.social · 9d

I remember reading #TheIllustratedMum many years ago! So it felt so nostalgic reading #PictureImperfect from #JacquelineWilson to revisit the characters from my childhood now as adults! Such a beautiful, sympathetic and tender depiction of #mentalillness.

Rhiann Johns @serenebutterfly.bsky.social · 14d

It’s getting toward the end of the year - and that means the search for a new #diary for next year begins now! I really need one that has a pocket for documents - somewhere I can keep my hospital letters in so I don’t list them! Any recommendations?

#Spoonie #ChronicIllness #ChronicLife

ALT: a woman sits on the ground writing in a notebook with a pen

media.tenor.com

Reposted by Rhiann Johns

A Chronic Voice @achronicvoice.com · 17d

"saying yes to a marathon visit to bookstores..or a voyage..is a way of reclaiming some of the stolen #joy #illness snatches away. I do so despite knowing the heavy price to pay for these small snippets of #normality.": buff.ly/Puz81fs

by @serenebutterfly.bsky.social
#ChronicPain #ChronicIllness

'Joy Existed Even if My Memories Were Not Free From Pain.'

It can be hard to feel joy abour travelling as a disabled person because of physical pain. But my favourite memories were not free from pain

'Joy Existed Even if My Memories Were Not Free From Pain.'

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Rhiann Johns @serenebutterfly.bsky.social · 15d

Thank you @AChVoice for sharing my #blogpost on how I’ve learnt that joy can coexist alongside #chronicpain and #chronicillness! 🫶

A Chronic Voice @achronicvoice.com · 17d

"saying yes to a marathon visit to bookstores..or a voyage..is a way of reclaiming some of the stolen #joy #illness snatches away. I do so despite knowing the heavy price to pay for these small snippets of #normality.": buff.ly/Puz81fs

by @serenebutterfly.bsky.social
#ChronicPain #ChronicIllness

It can be hard to feel joy abour travelling as a disabled person because of physical pain. But my favourite memories were not free from pain

Reliving Heartbreak: Life With A Chronic Illness –

Reposted by Rhiann Johns

Carrie - MySeveralWorlds - Artist, Author, Advocate @carriekellenberger.bsky.social · 17d

"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

Living with chronic illness is heartbreaking. Heartbreak that is repeated again and again as its worst moments are replayed over and over.

The Magic of Hope In the Storm of Chronic Illness –

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Rhiann Johns @serenebutterfly.bsky.social · Sep 3

“It’s so much more than a holiday; it’s a reason. A reason to get through the next appointment, the next flare-up, the next moment of despair when the walls of my bedroom feel like they are closing in.” www.brainlesionandme.com/magic-of-hop...

#ChronicIllness #ChronicallyIll #Hope #Travel

Through chronic illness and pain, hope becomes a lifeline — found in travel, memories, and the magic of looking forward to something new.

The Magic of Hope In the Storm of Chronic Illness –

Rhiann Johns @serenebutterfly.bsky.social · Aug 30

Chronic illness shrinks your world — #hope expands it.
Here’s how a #cruise helped me remember #joy still exists. Read: www.brainlesionandme.com/magic-of-hop...

#ChronicIllness #ChronicPain #ChronicallyIll #Disability #Travel #Cruising

Through chronic illness and pain, hope becomes a lifeline — found in travel, memories, and the magic of looking forward to something new.

The Magic of Hope In the Storm of Chronic Illness

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Rhiann Johns @serenebutterfly.bsky.social · Aug 29

The Magic of Hope In the Storm of Chronic Illness

Living with chronic illness can feel like being trapped in an endless storm. In this deeply personal essay, I explore how hope — whether in the form of travel, small joys, or quiet moments — helps me find light in the darkest days.

Living with chronic illness can feel like being trapped in an endless storm. In this deeply personal essay, I explore how hope — whether in the form of travel, small joys, or quiet moments — helps me find light in the darkest days.

Disability And Its Hidden Anger: This Body Betrays Me –

Rhiann Johns @serenebutterfly.bsky.social · Aug 26

Thank you @achronicvoice.com for sharing my latest blog post on the anger that often rears its ugly head from living inside my #disabled body and how I feel scared of my body 🫶

A Chronic Voice @achronicvoice.com · Aug 23

"people expect me to feel #grateful for the #SmallThings & the lessons that #illness can teach, be #inspirational & smile. I often feel pressured to paint a smile, brush the pain aside & find the silver linings underneath.": buff.ly/dxjrdAC

by @serenebutterfly.bsky.social
#NEisVoid

An exploration of living with disability, where anger is both a shield and a source of grief and how it feels to have a body that betrays you

The Magic of Books For The Chronically Ill –

Rhiann Johns @serenebutterfly.bsky.social · Aug 7

“For many, #reading is merely a hobby. But for those of us confined to bed, incapacitated by pain or from numerous other symptoms from #chronicillness, there are magic and power in those printed words.”
www.brainlesionandme.com/the-magic-of...

#ChronicallyIll #ChronicPain #InvisibleIllness #Books

Books are a passion of mine. When living with chronic illness magic can be found in the pages of books, transporting you away from sickness

40 People With Chronic Illness Share Their Best Pain Management Tips (What To Do If An Unforeseen Pain Flare Hits)

Reposted by Rhiann Johns

A Chronic Voice @achronicvoice.com · Jul 31

"Having a ‘ #SelfCare box’ has really helped, especially on the days when I am unable to get out of bed..contains everything that comforts me, enabling me to cope better during times of #stress & suffering. - @serenebutterfly.bsky.social ":
buff.ly/9PMmgy9

#ChronicPain #PainManagement #spoonie

A roundup of best chronic pain management tips from 40 people who live with chronic illness, for when a pain flare strikes without warning.

'Joy Existed Even if My Memories Were Not Free From Pain.'

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Rhiann Johns @serenebutterfly.bsky.social · Jul 28

Thank you @achronicvoice.com for sharing my #blogpost on my experience of #travel when living with #chronicillness and #disability and how pain and joy can coexist 🫶

A Chronic Voice @achronicvoice.com · Jul 24

"Reflecting on this #cruise..made me realise something. Some of the best #experiences and my happiest #memories were not pain— or symptom-free.": buff.ly/a9ELQEr

by @serenebutterfly.bsky.social‬
#LifeLessons #ChronicPain

It can be hard to feel joy abour travelling as a disabled person because of physical pain. But my favourite memories were not free from pain

Reposted by Rhiann Johns

National Book Tokens @nationalbooktokens.bsky.social · Jul 26

It's Disability Pride Month! ♿ ✨

This July, we're celebrating disabled voices that embody a rich spectrum of lived experiences 📚

Discover cutting-edge memoirs, swashbuckling fantasy, ravishing romance, pioneering disability activism manifestos and much more 📖 🧚⚔️ 💏

buff.ly/zCwuaWc

An orange border frames a collage of book covers. Text reads: Celebrating disabled voices: must read books for Disability Pride Month. Featured titles in the collage include: Get A Life, Chloe Brown by Talia Hibbert, Hits Different by Tasha Ghouri and Lizzie Huxley-Jones, All Tangled Up in Autism and Chronic Illness: A guide to navigating multiple conditions by Charli Clement, Meaty: Essays by Samantha Irby, Disability Visibility by Alice Wong, Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma, Out on a Limb by Hannah Bonam-Young, Always Only You by Chloe Liese, The Hearing Test by Eliza Barry Callahan.

Disability And Its Hidden Anger: This Body Betrays Me –

Reposted by Rhiann Johns

A Chronic Voice @achronicvoice.com · Jul 10

"My #body moves in ways I can’t #control —or it refuses to move at all. It aches quietly, collapses without warning & spasms for no reason. It hides things from me, keeps its secrets & exposes me in the worst ways.": buff.ly/MWdkmQ9

by @serenebutterfly.bsky.social
#ChronicIllness #FND #disability

An exploration of living with disability, where anger is both a shield and a source of grief and how it feels to have a body that betrays you

Disability And Its Hidden Anger: This Body Betrays Me –

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Rhiann Johns @serenebutterfly.bsky.social · Jul 12

Thank you @achronicvoice.com for sharing my latest blog post on the anger that often rears its ugly head from living inside my #disabled body and how I feel scared of my body 🫶

A Chronic Voice @achronicvoice.com · Jul 10

"My #body moves in ways I can’t #control —or it refuses to move at all. It aches quietly, collapses without warning & spasms for no reason. It hides things from me, keeps its secrets & exposes me in the worst ways.": buff.ly/MWdkmQ9

by @serenebutterfly.bsky.social
#ChronicIllness #FND #disability

An exploration of living with disability, where anger is both a shield and a source of grief and how it feels to have a body that betrays you

a person holding a cardboard box with curology written on it

Rhiann Johns @serenebutterfly.bsky.social · Jul 11

…accidentally ordering two of the same item! Not being able to take it back straight to the store I am out of pocket of a few quid for a courier to come to my house to pick it up instead! It all adds up and helps that I have #PIP

#TakingThePIP #Disability #DisabledLife

ALT: a person holding a cardboard box with curology written on it

media.tenor.com

Rhiann Johns @serenebutterfly.bsky.social · Jul 11

Another costly outgoing when you become #disabled which isn’t mentioned enough is the cost of postage and packing. Not being able to get out and about easily, I have no choice to have things delivered to the house. And now I have to send something back after…

From Shame to Pride: Finding Pride in Disability –

Rhiann Johns @serenebutterfly.bsky.social · Jul 5

"By accepting and embracing my #disability, I am by extension accepting and embracing myself." www.brainlesionandme.com/from-shame-t...

#ChronicIllness #ChronicallyIll #Disability #DisabilityPride #DisabilityPrideMonth

We often made to feel shame toward our disabled bodies and disability. Disability Pride Month is helping to change shame into pride

Depression: The Darker Side of Chronic Illness –

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Rhiann Johns @serenebutterfly.bsky.social · Jul 4

For anyone looking for a book that has authentic and relatable #chronicillness and #disability representation then I thoroughly recommend #TheChemistryTest. I am almost half-way through and am loving it. So many of the situations/thoughts/comments are ones I too have experienced

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Reposted by Rhiann Johns

A Chronic Voice @achronicvoice.com · Jun 25

“Because living with a #ChronicIllness is terrifyingly #unpredictable, it has no neat beginning, middle and end. Chronic illness offers no arc, no gratifying climax or satisfying resolution.":https://buff.ly/z8DhTNn

by @serenebutterfly.bsky.social
#ChronicPain #NEisvoid #disability

When living with chronic illness and struggling to cope with its many symptoms, depression and thoughts of suicide can quickly appear

Depression: The Darker Side of Chronic Illness –

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Rhiann Johns @serenebutterfly.bsky.social · Jun 27

Thank you @achronicvoice.com for sharing my blog post on the #depression that often sadly rears its ugly head when living with #chronicillness and #disability

A Chronic Voice @achronicvoice.com · Jun 25

“Because living with a #ChronicIllness is terrifyingly #unpredictable, it has no neat beginning, middle and end. Chronic illness offers no arc, no gratifying climax or satisfying resolution.":https://buff.ly/z8DhTNn

by @serenebutterfly.bsky.social
#ChronicPain #NEisvoid #disability

When living with chronic illness and struggling to cope with its many symptoms, depression and thoughts of suicide can quickly appear

Labour's disability benefit cuts set to be a 'disaster on all fronts'

Reposted by Rhiann Johns

Big Issue @bigissue.com · Jun 22

Disability benefits cuts will harm hundreds of thousands of people and cost some individuals almost £900 a month, MPs have warned.

www.bigissue.com

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Rhiann Johns @serenebutterfly.bsky.social · Jun 20

What a phenomenon! And thank you DisneyPlus for sharing this with us. I would love to physically see the show, but cannot due to ill health and disability. But for nearly two hours tonight I was transported to Arendelle and forgot about #chronicillness for a while! Pure magic!🪄