Rhiann Johns
@serenebutterfly.bsky.social
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
"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
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…
myrockindisabledlife.com
"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
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
brainlesionandme.com
"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
How Many Dates Before I Mention My Body Is Trying to Kill Me?
I’m not catfishing you — my body is just complicated
medium.com
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! 🫶
A Chronic Voice@achronicvoice.com · 2y ago" #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
“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
"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
Bot Verification
myseveralworlds.com
"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
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…
bloomingmindfulness.co.uk
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
"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
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."
themighty.com
"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
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
brainlesionandme.com
"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
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."
cosmopolitan.com
“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
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
brainlesionandme.com
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! 🫶
A Chronic Voice@achronicvoice.com · 5d ago"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
"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
I Thought Disability Made Me Harder to Love
What disabled writers taught me about romance, interdependence, intimacy, and the difference between convenience and love
itsmevox.substack.com
"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
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.
thehealthsessions.com
"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
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…
asmyjointsturn.com
"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
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 …
nohalfmeasures.blog
"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
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.
brainlesionandme.com
"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
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?”
vogue.co.uk
"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
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…
thethrivingspoonie.com
"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
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.
achronicvoice.com
"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
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.
invisiblyme.com
"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
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."
themighty.com
"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
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.
brainlesionandme.com
"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
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.
myblurredworld.com
"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
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.
publicsource.org
"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
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.
despitepain.com
"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
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.
crackednailsandsplitends.co.uk