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Rhiann Johns

@serenebutterfly.bsky.social
138 followers 76 following 461 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 brainlesionandme.com

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Rhiann Johns @serenebutterfly.bsky.social · 19h
"But it’s been ten years, and I haven’t learned how to actually live with a chronic illness. I don’t know how to be the real me in my life anymore." thought.is/how-my-chron... #ChronicIllness #ChronicallyIll #NEISVoid #Identity
thought.is
How My Chronic Illness Has Made Me Lose My Identity
As I grow up and try to make my mark in this world, I don’t want my disease to define me. But how can it not when it exists in the most fundamental part of who I am?
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Rhiann Johns @serenebutterfly.bsky.social · 21h
"The world moves on, but still, I remain trapped, my body tethered to the confines of my home, wishing, like Ariel, that I could be part of the world outside my prison." www.brainlesionandme.com/why-im-not-f... #ChronicIllness #ChronicallyIll #NEISVoid #InvisibleIllness
brainlesionandme.com
Why I'm Not Faking Being Sick; I'm Faking Being Well – %
Online and in real-life I'm often accused of faking being sick for attention or likes on social media. But I'm actually faking being well
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Rhiann Johns @serenebutterfly.bsky.social · 22h
"This isn’t cool. This isn’t a lifestyle trend; it is a lifestyle destroyer." medium.com/illumination... #ChronicIllness #ChronicallyIll #NEISVoid #Disability
medium.com
Are Disabled Creators a “Lifestyle Trend”?
How being chronically ill and disabled didn’t become cool.
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Rhiann Johns @serenebutterfly.bsky.social · 05/10/2026
"What doesn’t work is pretending the illness has nothing to do with who I am. It’s in how I plan, what I notice, and how I decide what matters on a limited budget." www.thethrivingspoonie.com/the-hidden-r... via @thethrivingspoonie.com #ChronicIllness #ChronicallyIll #NEISVoid
thethrivingspoonie.com
The Hidden Reality of Chronic Illness and Identity
"Don't let your illness define you" is well meant, but it asks you to keep something real small. Here's what hiding your chronic illness costs, and how to be more open about who you are now without…
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Rhiann Johns @serenebutterfly.bsky.social · 05/10/2026
"There is nothing fashionable about chronic pain, crushing fatigue, brain fog or having to think about the consequences of an activity that most people would never give a second thought to." crackednailsandsplitends.co.uk/blog/disable... #ChronicIllness #ChronicallyIll #ChronicPain #Disability
crackednailsandsplitends.co.uk
Disabled Women, Chronic Illness and the Myth That Disability Is “Cool” - Cracked Nails & Split Ends
A personal response to claims that disability has become “cool”, exploring disabled women, ME/CFS, fibromyalgia, invisible disability, ableism and chronic illness communities.
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Rhiann Johns @serenebutterfly.bsky.social · 05/10/2026
"Some disabled people have a harder time accepting their differences than others and may never get to a place where they are happy being disabled, but it’s something we all go through." myrockindisabledlife.com/2026/08/18/w... #Disability #DisabilityAwareness #NEISVoid #DisabledLife
myrockindisabledlife.com
What No One Tells You About Disability Acceptance
Disability acceptance is a slow, personal journey. Learn what no one tells you about ableism, inaccessibility, and finding support as a disabled person.
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Rhiann Johns @serenebutterfly.bsky.social · 03/10/2026
"The night stretches ahead of me, not as a time for sleep, but as something to endure: hour by hour, minute by minute." www.brainlesionandme.com/painsomnia-w... #ChronicPain #Painsomnia #NEISVoid #PainAwarenessMonth
brainlesionandme.com
Painsomnia: What It's Like Lying Awake With Chronic Pain –
What is painsomnia? A personal account of chronic pain, sleepless nights, loneliness, and the exhaustion that follows into the day.
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Rhiann Johns @serenebutterfly.bsky.social · 02/10/2026
"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... #ChronicPain #PainAwarenessMonth #NEISVoid
brainlesionandme.com
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.
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Rhiann Johns @serenebutterfly.bsky.social · 02/10/2026
Thank you so much @apainprincess.bsky.social for taking the time to share my blog post on the lessons I’ve learned about living with #ChronicIllness and #ChronicPain whilst at sea #cruising. It’s much appreciated! 🫶
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Rhiann Johns @serenebutterfly.bsky.social · 01/10/2026
Think tonight’s episode of #CelebrityTraitors is a testament to how this is one of the best series on TV at the moment. It’s a show that keeps evolving, with surprises and new twists that makes it feel fresh from previous series. It’s so unpredictable and the cast makes it oh so funny!
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Rhiann Johns @serenebutterfly.bsky.social · 01/10/2026
#Strictly. #GBBO. And now #CelebrityTraitors. Autumn television is some of the best TV of the year. Such brilliantly entertaining, cozy and comforting TV.
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Rhiann Johns @serenebutterfly.bsky.social · 30/09/2026
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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Rhiann Johns @serenebutterfly.bsky.social · 29/09/2026
In so much #pain that I cannot sleep. So, once again I have chosen to escape this reality and escape into a #book! Although it’s taking me much longer to read than usual, I have just finished my 100th book of the year which is a record for me! #Painsomnia #ChronicLife
static.klipy.com
Belle's Enchanted Library Moment
ALT: Belle's Enchanted Library Moment
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Rhiann Johns @serenebutterfly.bsky.social · 28/09/2026
Wordle 1,927 2/6 ⬜🟩⬜🟨⬜ 🟩🟩🟩🟩🟩 #Wordle
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Rhiann Johns @serenebutterfly.bsky.social · 27/09/2026
Thank you so much @myseveralworlds.com for taking the time to share my blog post on how living with #ChronicIllness is constantly having to relive the same heartbreaks over and over again. It’s much appreciated! 🫶
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Reposted by Rhiann Johns
A Chronic Voice @achronicvoice.com · 20/09/2026
"I realised that #traveling with #ChronicIllness has much in common with life at sea. Both have taught me that no matter how carefully I plan, forces beyond my control can still alter a journey’s course.": buff.ly/1PWVPql by @serenebutterfly.bsky.social #LifeJourney #disability #ChronicPain
buff.ly
Chronic Illness: Finding Hope on an Unpredictable Journey
Living with chronic illness has taught me that life can change without warning. Cruising has taught me to find hope in the unexpected.
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Reposted by Rhiann Johns
A Chronic Voice @achronicvoice.com · 24/03/2025
" #Fatigue is difficult to articulate.. Words grasp at it but never quite manage to capture it perfectly. However, when I do find the right words, it mutates, becoming more punishing & a damn more insidious": buff.ly/fRJK0ri by @serenebutterfly.bsky.social #ChronicFatigue #ChronicPain #BrainFog
buff.ly
Fatigue: A More Fitting F-Word For My Chronic Life –
There are many F-words I can think of to describe living with a chronic illness and disability. But the first that comes to mind is fatigue
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Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
Wordle 1,924 2/6 ⬜⬜🟨⬜🟩 🟩🟩🟩🟩🟩 #Wordle
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Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
"You only see how much my pain affects me in that specific moment… You don’t see all the sleep I lost because of pain...People in pain become very good at hiding pain…that doesn’t mean they are better." myrockindisabledlife.com/2026/05/12/w... #ChronicPain #PainAwarenessMonth #NEISVoid
myrockindisabledlife.com
What Chronic Pain Patients Wish Their Doctors Understood About Pain
When you are in pain, often people go to the doctor to get relief because no one wants to live in pain if there is a way to get out of it. Doctors often look for visible signs of pain, such as tear…
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Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
"For me, the real F-word is Fatigue because it is my most formidable adversary – an intensely debilitating symptom that not only obliterates my energy but also the might to make my existing symptoms worse." www.brainlesionandme.com/fatigue-a-mo... #ChronicIllness #ChronicFatigue #ChronicallyIll
brainlesionandme.com
Fatigue: A More Fitting F-Word For My Chronic Life –
There are many F-words I can think of to describe living with a chronic illness and disability. But the first that comes to mind is fatigue
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Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
"My chronic illness is just a facet in my many-faceted self. There’s an actual woman underneath all the diagnoses. I’ve survived enough bullshit to understand what really matters." medium.com/contemplate/... via @ellebecker.substack.com #ChronicIllness #ChronicallyIll #NEISVoid #Dating
medium.com
How Many Dates Before I Mention My Body Is Trying to Kill Me?
I’m not catfishing you — my body is just complicated
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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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Reposted by Rhiann Johns
Princess in the Tower @apainprincess.bsky.social · 14/05/2026
“There is a reason why you only see me on good days; because I only let you see me on such days. My worst days instead spent behind closed doors… where no one can see my tears when the pain is more than I can bear.” buff.ly/3y8Osod @serenebutterfly.bsky.social #FND #ChronicIllness #ChronicPain
RobinReach
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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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Rhiann Johns @serenebutterfly.bsky.social · 25/09/2026
"We often focus on mental health when we think of suicide prevention, but good pain management can also be seen as suicide prevention." www.bloomingmindfulness.co.uk/why-good-pai... via @beverleybutterfly.bsky.social #ChronicPain #PainAwarenessMonth #SuicidePreventionMonth #NEISVoid
bloomingmindfulness.co.uk
Why Good Pain Management Is Suicide Prevention -
I don’t think that it is a coincidence that September is both Pain Awareness Month, and Suicide Prevention Month. I have lived with chronic pain for over twenty years, and I can understand why bad…
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Rhiann Johns @serenebutterfly.bsky.social · 24/09/2026
Finished binge watching #TheBlame tonight which is one I would thoroughly recommend. One that is thought provoking and really delves into the blatant misogyny that plagues the police force. An institution that we should all feel safe and have faith in. Shocking and upsetting
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Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
"The parts people don’t see. The parts I hide so I can try to be normal for a day, or because I don’t want my #disability to be all that I talk about." themighty.com/topic/degene... #ChronicIllness #ChronicallyIll #InvisibleIllness #NEISVoid
themighty.com
What You Don't See on the Days I Push Through the Pain With a Smile
"We do our best to put on our 'happy faces,' to do things with our family, and then we pay for it later."
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Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
"My body moves in ways I can't control—or it refuses to move at all. It aches quietly, collapses without warning, and spasms for no reason. It hides things from me, keeps its secrets, and exposes me in the worst ways." www.brainlesionandme.com/disability-a... #Disability #NEISVoid #DisabledLife
brainlesionandme.com
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
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Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
"I’m not 'brave' for having a disability: it’s not a choice. I didn’t pluck this semi-defective body from the line-up so that no one else had to. This is just who I am." www.cosmopolitan.com/uk/reports/a... #Disability #DisabilityAwareness #DisabledLife
cosmopolitan.com
Why not all disabled people want to be seen as ‘an inspiration’
"I’m not 'brave' for having a disability: it’s not a choice."
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Reposted by Rhiann Johns
A Chronic Voice @achronicvoice.com · 11/09/2026
“Neither is being on #disability a life of luxury. I still live at home with my #parents, a fact that I find embarrassing..But my #health and the severity of my symptoms make being able to live alone & independently perilous.”: buff.ly/TcOMbV9 By @serenebutterfly.bsky.social #NEisVoid #ChronicPain
brainlesionandme.com
I'm on Benefits, But Stigma Makes Me Feel Ashamed –
Because of my disability and the severe symptoms it brings, I can't work. As a result, I'm on benefits, but the stigma makes me feel ashamed
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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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Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
"My relationship needs to be the safe space to share my fears and my suffering just as it is, knowing it might not change and having you say it’s ok if it doesn’t." itsmevox.substack.com/p/i-thought-... #Disability #DisabledLife #ChronicallyIll #NEISVoid
itsmevox.substack.com
I Thought Disability Made Me Harder to Love
What disabled writers taught me about romance, interdependence, intimacy, and the difference between convenience and love
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Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
"Developing your own illness-proof personal curriculum can provide a sense of purpose and fulfillment that supports your mental health." thehealthsessions.com/personal-cur... #ChronicIllness #ChronicPain #ChronicallyIll #NEISVoid
thehealthsessions.com
15 Illness-Proof Projects for Your Personal Curriculum | The Health Sessions
Love to learn? Check out 15 accessible ideas to build your own personal curriculum with chronic illness.
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Rhiann Johns @serenebutterfly.bsky.social · 23/09/2026
"How do I maintain some independence without constantly pushing myself into a crash? How do I decide what deserves today’s limited supply of energy?" asmyjointsturn.com/2026/09/20/p... #ChronicIllness #ChronicPain #ChronicFatigue #ChronicallyIll #NEISVoid
asmyjointsturn.com
Pacing myself…apparently…
Pacing has always been difficult for me. For years, my preferred method of energy management was simple: throw every ounce of energy I had into accomplishing something and then collapse when it was…
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
"The moment I open a good book, something remarkable happens. The walls of my life begin to soften. The endless mental loops of treatment schedules, symptoms, and side effects begin to fade into the background." nohalfmeasures.blog/2026/09/08/g... #ChronicIllness #Reading #MagicOfReading #Books
nohalfmeasures.blog
Getting lost in a good book
There are days when the world feels too heavy to carry. Days when the weight of terminal cancer sits on my chest before my feet even touch the floor. Days when the scanxiety hums in the background …
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
"Sometimes my body gives me flashes of my old self, only to snatch them back. I never know which version of me I’ll wake up to." www.brainlesionandme.com/dynamic-disa... #ChronicIllness #ChronicallyIll #DynamicDisability #NEISVoid
brainlesionandme.com
Dynamic Disability: The Truth About Life in an Unpredictable Body –
A personal journey of living with a dynamic disability, navigating mobility aids, imposter syndrome, and finding resilience in daily life.
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
"Is my internalised ableism preventing me from accepting that I am disabled, or is it a mixture of denial, shock and grief for the body I once had?" www.vogue.co.uk/article/self... #ChronicIllness #ChronicallyIll #Disability #NEISVoid
vogue.co.uk
If I’m Disabled, Why Can’t I Say It?
“Is my internalised ableism preventing me from accepting that I am disabled, or is it a mixture of denial, shock and grief for the body I once had?”
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
"Identity isn't something chronic illness took from you. It's something that's still updating." www.thethrivingspoonie.com/who-are-you-... via @thethrivingspoonie.com #ChronicIllness #ChronicallyIll #NEISVoid #Identity
thethrivingspoonie.com
Who Are You Outside of Your Chronic Illness? (And Why That Question Is So Hard)
Chronic illness doesn't erase who you are, but it does make "finding yourself" a lot harder than the usual advice admits. This post names what actually gets in the way and offers small, honest ways…
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
How brilliant that tonight the #GBBO is back on our screens. With that and the return of #Strictly comfort television that is uplifting and pure escapism at its finest! It’s like #hygge for our television screens!
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
"To know that there is still #beauty in this world despite my #pain helps me to endure it with more #grace." achronicvoice.com/how-to-live-... via @achronicvoice.com #ChronicIllness #ChronicPain #ChronicallyIll #NEISVoid #ChronicLife
achronicvoice.com
How to Live with Chronic Illness (My Personal Approaches)
People often ask me how to live with chronic illness, especially when chronic pain seems endless. Here are my personal approaches I use to thrive.
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Rhiann Johns @serenebutterfly.bsky.social · 22/09/2026
"It can be surprisingly difficult to remember to take #medications and #supplements on a regular basis, especially if you take them by the boatload." invisiblyme.com/6-ways-remem... #SpoonieHacks #ChronicIllness #ChronicPain #ChronicallyIll #NEISVoid #ChronicLife
invisiblyme.com
6 Ways To Remember To Take Your Medications & Supplements - Invisibly Me
Sometimes forget your meds? Here are 6 ways to remember to take your medications and supplements, from pill boxes to reminder apps.
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Rhiann Johns @serenebutterfly.bsky.social · 21/09/2026
"So, if you wonder why people in chronic pain don’t manage more in our apparently endless supply of free time, this is why. It’s not free time. As soon as we demand too much of it, there’s a bill." themighty.com/topic/chroni... #ChronicPain #PainAwarenessMonth #NEISVoid #ChronicallyIll
themighty.com
Why It's Hard to Get Anything Done When You're in Pain
"I am in pain now, and almost certainly still will be whenever you read this."
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Rhiann Johns @serenebutterfly.bsky.social · 21/09/2026
"There is still a part of me that wants to push through, to pretend I can manage what I had planned and refuse to let my symptoms dictate my day." www.brainlesionandme.com/chronic-illn... #ChronicIllness #ChronicPain #ChronicallyIll #NEISVoid #Disability #Travel #Cruising
brainlesionandme.com
Chronic Illness: Finding Hope on an Unpredictable Journey
Living with chronic illness has taught me that life can change without warning. Cruising has taught me to find hope in the unexpected.
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Rhiann Johns @serenebutterfly.bsky.social · 21/09/2026
"To ignore the word is to ignore the fight that I, and so many others, face every single day." myblurredworld.com/2026/09/06/e... via @myblurredworld.bsky.social #Disabled #Disability #DisabilityAwareness #NEISVoid
myblurredworld.com
Exploring my relationship with the word ‘disabled’ - My Blurred World
I used to have a very complicated relationship with the word 'disabled', let me talk you through our history and where I'm at now.
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Rhiann Johns @serenebutterfly.bsky.social · 21/09/2026
"But underneath the joke is the reality that managing all of this has become a full-time job." www.publicsource.org/pots-long-co... via @publicsource.org #ChronicIllness #ChronicallyIll #InvisibleIllness #NEISVoid
publicsource.org
I look fine, but dealing with chronic illness is my full-time job
Jennifer McCalla doesn't look sick, but living with long COVID and POTS is a full-time job. She writes about invisible illness and the fight to be believed.
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Rhiann Johns @serenebutterfly.bsky.social · 21/09/2026
"But our pain is real, even though there is nothing to show for it and no explanation for it. But the physical pain is only a small part of what we live with." despitepain.com/2026/09/01/w... via @despitepain.bsky.social #ChronicPain #PainAwarenessMonth #NEISVoid #ChronicLife
despitepain.com
What's it Like to Live With Pain — With a Capital P - Despite Pain
In this post, I explain what it's really like to live with pain. It's more than the physical pain because pain brings a lot of other issues.
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Rhiann Johns @serenebutterfly.bsky.social · 21/09/2026
"I should not have to prove that I am ill enough to deserve understanding. Neither should anyone else." crackednailsandsplitends.co.uk/blog/when-di... #ChronicIllness #ChronicallyIll #InvisibleIllness #NEISVoid #Disability
crackednailsandsplitends.co.uk
When Disabled People Attack Other Disabled People<br/><br/>Why do disabled people judge each other? I explore invisible illness, mobility aids and why our community needs compassion instead of competition. - Cracked Nails & Split Ends
Disability is not a competition. I explore invisible illness, mobility aids and why disabled people deserve compassion, accessibility and solidarity.
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Reposted by Rhiann Johns
A Chronic Voice @achronicvoice.com · 19/09/2026
"When people ask how I am, I try not to default to 'fine'. Sometimes I say, “I’m managing.” Sometimes, “Today’s a #crutch kind of day.” Other times, I simply say, “I’m here.” And that is enough.": buff.ly/BSUJD1j by @serenebutterfly.bsky.social #disability #DynamicDisabilities #spoonie #ChronicPain
brainlesionandme.com
Dynamic Disability: The Truth About Life in an Unpredictable Body –
A personal journey of living with a dynamic disability, navigating mobility aids, imposter syndrome, and finding resilience in daily life.
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Rhiann Johns @serenebutterfly.bsky.social · 19/09/2026
"My symptoms didn’t stay behind when I went on holiday. They travelled with me through every step, decision, and mile of the journey." www.brainlesionandme.com/chronic-illn... #ChronicIllness #ChronicallyIll #Travel #Cruising
brainlesionandme.com
Chronic Illness: Finding Hope on an Unpredictable Journey
Living with chronic illness has taught me that life can change without warning. Cruising has taught me to find hope in the unexpected.
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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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