Rhiann Johns
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serenebutterfly.bsky.social
Rhiann Johns
@serenebutterfly.bsky.social
89 followers 55 following 85 posts
Blogger documenting life with chronic illness and disability. Aside from posts about the chronic life, I am an avid reader, and a square-eyed binge-watcher of TV and films

http://brainlesionandme.com
Posts Replies Media Videos
Reposted by Rhiann Johns
achronicvoice.com
"My body..promises me a good day & then pulls the rug from under me without warning. Yet, people speak of ‘listening to your body’ as if it’s a wise inner compass. Mine no longer feels like a strong, #resilient #body.": buff.ly/EioKYD1

by @serenebutterfly.bsky.social
#ChronicPain #NEisVoid #spoonie
Disability And Its Hidden Anger: This Body Betrays Me –
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
buff.ly
November 3, 2025 at 11:30 AM
serenebutterfly.bsky.social
Thank you @achronicvoice.com for sharing my personal essay on how living with a #disability has made me feel unsafe in my own body and the anger that has arisen because of it. I appreciate it! 🫶
achronicvoice.com A Chronic Voice @achronicvoice.com · 11d
"My body..promises me a good day & then pulls the rug from under me without warning. Yet, people speak of ‘listening to your body’ as if it’s a wise inner compass. Mine no longer feels like a strong, #resilient #body.": buff.ly/EioKYD1

by @serenebutterfly.bsky.social
#ChronicPain #NEisVoid #spoonie
Disability And Its Hidden Anger: This Body Betrays Me –
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
buff.ly
November 8, 2025 at 11:04 AM
Reposted by Rhiann Johns
carriekellenberger.bsky.social
"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
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.
www.brainlesionandme.com
October 21, 2025 at 5:18 PM
Reposted by Rhiann Johns
creakyjoints.bsky.social
The hardest part of living with an invisible illness isn’t always the pain — it’s feeling unseen.

This #InvisibleDisabilitiesWeek, we’re standing with everyone living with conditions that don’t always show.

What helps you feel seen, believed, or supported? 💙
#InvisibleNoMore
October 20, 2025 at 6:36 AM
Reposted by Rhiann Johns
chronicallynikki.bsky.social
Sometimes I am not isolated I am just self-isolating for a reason. And that is some serious self-care for a day, two, a week or more. #selfcare
October 15, 2025 at 6:06 PM
serenebutterfly.bsky.social
Thank you so much @achronicvoice.com for sharing my post on my travel experiences and how both joy and pain (and other symptoms) coexisted 🫶
October 16, 2025 at 9:36 AM
serenebutterfly.bsky.social
"When battling through a severely debilitating #flare, it can feel like as though my physical and #mentalhealth are conspiring against me." www.brainlesionandme.com/chronic-illn...

#ChronicIllness #ChronicPain #DepressionAwarenessMonth #MentalHealth #MentalHealthAwareness
Chronic Illness: A Battle of Mental Health –
When living with a chronic illness, it becomes not only a battle of physical health but also a battle of mental health
www.brainlesionandme.com
October 9, 2025 at 2:41 PM
serenebutterfly.bsky.social
“The decision whether to take a painkiller is a catch-22. Whether I choose to endure the pain or take a painkiller and face the side effects, it feels that I lose either way.” www.brainlesionandme.com/pain-or-pain...

#ChronicIllness #ChronicPain #ChronicallyIll #ChronicLife
Pain or Painkiller: A Difficult Decision To Make –
When experiencing chronic pain, the choice of whether to take a painkiller is not a simple one. Instead, it becomes a choice between pain or painkiller.
www.brainlesionandme.com
October 7, 2025 at 8:38 PM
serenebutterfly.bsky.social
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 🫶
October 6, 2025 at 1:48 PM
serenebutterfly.bsky.social
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.
September 29, 2025 at 1:15 PM
serenebutterfly.bsky.social
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
a woman sits on the ground writing in a notebook with a pen
ALT: a woman sits on the ground writing in a notebook with a pen
media.tenor.com
September 24, 2025 at 12:35 PM
Reposted by Rhiann Johns
achronicvoice.com
"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
buff.ly
September 22, 2025 at 7:30 AM
serenebutterfly.bsky.social
Thank you @AChVoice for sharing my #blogpost on how I’ve learnt that joy can coexist alongside #chronicpain and #chronicillness! 🫶
September 23, 2025 at 1:11 PM
Reposted by Rhiann Johns
carriekellenberger.bsky.social
"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
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.
www.brainlesionandme.com
September 21, 2025 at 4:37 PM
serenebutterfly.bsky.social
“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
The Magic of Hope In the Storm of Chronic Illness –
Through chronic illness and pain, hope becomes a lifeline — found in travel, memories, and the magic of looking forward to something new.
www.brainlesionandme.com
September 3, 2025 at 9:16 AM
serenebutterfly.bsky.social
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
The Magic of Hope In the Storm of Chronic Illness –
Through chronic illness and pain, hope becomes a lifeline — found in travel, memories, and the magic of looking forward to something new.
www.brainlesionandme.com
August 30, 2025 at 9:58 AM
serenebutterfly.bsky.social
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.
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.
www.brainlesionandme.com
August 29, 2025 at 9:15 PM
serenebutterfly.bsky.social
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 🫶
August 26, 2025 at 11:49 AM
serenebutterfly.bsky.social
“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
The Magic of Books For The Chronically Ill –
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
www.brainlesionandme.com
August 7, 2025 at 12:37 PM
Reposted by Rhiann Johns
achronicvoice.com
"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
40 People With Chronic Illness Share Their Best Pain Management Tips (What To Do If An Unforeseen Pain Flare Hits)
A roundup of best chronic pain management tips from 40 people who live with chronic illness, for when a pain flare strikes without warning.
buff.ly
July 31, 2025 at 3:30 PM
serenebutterfly.bsky.social
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 🫶
July 28, 2025 at 2:01 PM
Reposted by Rhiann Johns
nationalbooktokens.bsky.social
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.
July 26, 2025 at 6:30 PM
Reposted by Rhiann Johns
achronicvoice.com
"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
Disability And Its Hidden Anger: This Body Betrays Me –
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
buff.ly
July 10, 2025 at 9:30 AM
serenebutterfly.bsky.social
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 🫶
achronicvoice.com 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
Disability And Its Hidden Anger: This Body Betrays Me –
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
buff.ly
July 12, 2025 at 9:14 PM
serenebutterfly.bsky.social
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…
July 11, 2025 at 3:44 PM