#lived-experience — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #lived-experience, aggregated by home.social.
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SAM’S BODY MADE ME THINK
ABOUT MY OWN 💎Watching Sam's video on YouTube today, I couldn't help noticing his weight.
https://youtu.be/l6UNS8zFdGE?si=BwlIxbTWYv--obu2
For an able-bodied person, he might simply look on the bigger side. But watching him struggle with movement, I found myself wondering how much additional work that weight must place on a disabled body already having enormous difficulty moving.
I say that with enormous understanding and sympathy, because I had a major stroke myself and have lived with left-sided hemiplegia for decades now. I know how much effort an impaired body can require simply to get through an ordinary day.
In my own case, losing a substantial amount of weight through daily fasting has changed my life.
Moving is vastly easier. My balance has improved to the point where I can now stand still comfortably. I no longer feel so top-heavy and unstable. Walking is easier both uphill and downhill. I live in Hobart, so walking around this city provides plenty of opportunity to test that.
I can dress myself again. For years, I needed my partner's help with much of my self-care and dressing. My body simply feels lighter and easier to carry around, and I can reach everything with my one usable hand.
Breathwork has been equally important for me. I practise it every day, and together with fasting, it has changed the way I experience both my disability and my body.
For me, breathwork has coincided with far less depression, clearer airways and a much more active mind. I write every day now, often using AI to help me turn my thoughts into words.
I'm not suggesting either fasting or breathwork is a treatment for what happened to Sam. His medical situation was vastly more complicated than mine.
I'm only speaking about what happened to me.
When I was Sam's age, being disabled and overweight didn't seem particularly important. Nobody in the medical world said much about my weight, so I didn't either.
By 50, carrying it was becoming challenging.
By 65, it was crushing.
That was when I began fasting.
Becoming physically lighter has given me an extraordinary amount of my independence back.
I'm still disabled. That hasn't magically disappeared.
But at 70 now, I'm lighter, fitter and more independent. I can walk 10,000 steps in a day, dress myself, and move through the world far more easily than I could several years ago.
For this disabled body, it has been life-changing.
@3goodthings @DigitalCoup @meditation @economics_that_works
@startrek#disability #stroke #hemiplegia #fasting #breathwork #recovery #mobility #independence #aging #health #livedexperience #Tasmania #Hobart #AI #accessibility #people #peace #person
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Good morning,
Fancy listening to my latest podcast episode?
#Podcast #Spotify #ApplePodcasts #mentalhealth #livedexperience
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Hi 👋 mstdn.social. I’m Toren, artist, podcaster, ex-martial artist, biochemistry‑trained (CMA accredited).I write about resilience, identity, psychology, and lived experience — the mythic‑grit work of rebuilding yourself and staying here. Looking forward to finding community, sharing reflections, and connecting with people who value honest conversations.
#Introduction #Psychology #Biochemistry #MentalHealth #Resilience #LivedExperience #Podcaster #Artist #MartialArts #stillhere
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The most important books in my life were never printed on paper.
My grandmother's terrace in Granada. The Göta River at dawn. My mat during savasana.
Where does your real learning happen?
#yoga #wisdom #livedexperience
#embodiedpractice #breathwork #morningritual
#Gothenburg #nordiclife #spiritualwisdom -
Have you ever avoided asking for help because you were worried about how people might react?
Feel free to share as much or as little as you're comfortable with.
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Recent Canadian mental health advocacy efforts have focused on a persistent problem: many people still avoid seeking help because they fear judgment or being labelled.
Access matters. But so does trust.
People need to feel safe enough to reach out before support can help.
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Stigma is more than a social problem.
Research shows it can discourage people from seeking healthcare, treatment, and support, while increasing isolation and delaying help-seeking.
Stigma affects outcomes because it affects behaviour.
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Tonight's question:
What public service has had the biggest positive impact on your life? Many public services quietly improve lives every day.
I'd love to hear about one that made a meaningful difference for you or your community.
#PublicHealth #Community #PublicServices #Healthcare #LivedExperience
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Across Canada, healthcare access remains a major public conversation.
Behind every discussion about capacity, staffing, or wait times are real people trying to access care.
Good policy requires evidence, but it also requires understanding how people experience the systems designed to help them.
#PublicHealth #Community #PublicServices #Healthcare #LivedExperience
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Public services touch nearly every part of our lives, often without us noticing.
Healthcare, education, public health, libraries, disability supports, housing programs, and more all exist to improve outcomes for individuals and communities.
Good policy should ultimately be judged by its impact on people's lives.
#PublicHealth #Community #PublicServices #Healthcare #LivedExperience
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Tonight's question:
What is one thing someone said or did that helped you feel understood during a difficult time?
Feel free to share as much or as little as you're comfortable with.
#MentalHealth #PublicHealth #EndTheStigma #Recovery #LivedExperience
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Stigma doesn't always look like hostility.
Sometimes it looks like assumptions, stereotypes, or judgment that discourage people from asking for help.
Public health isn't only about services. It's also about creating conditions where people feel safe enough to use them.
#MentalHealth #PublicHealth #EndTheStigma #Recovery #LivedExperience
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Migraine, Perception, and Creative Flow
Living Inside A Migraine
When pain, perception, and medication reshape daily life
I’ve been dealing with a migraine for nine days. This isn’t just a headache—it comes with aura, Alice in Wonderland syndrome, and persistent vertigo with nausea. My perception gets distorted, my thinking slows down, and basic tasks become difficult. The medication helps with the pain, but it brings its own side effects, and overall, it’s been hard to function.
In the middle of this, something unexpected happened.
A Brief Shift in State
Unexpected focus and creative flow during disruption
While I was heavily medicated, I had a period of intense creative focus. For a few hours, I was able to paint with a level of freedom that I don’t usually reach. It felt like my usual mental filters were lowered. I wasn’t second‑guessing decisions or holding back. I just worked.
The result was different from my normal work—more direct, less controlled, but also more expressive.
This raised a question for me: what actually changed in that moment?
Changes in Perception
How migraine and medication alter access, not ability
Triptans, the medication I use for acute migraine attacks, act on serotonin receptors. They’re not psychedelics, but they do affect how the brain processes signals. Combined with the migraine itself—especially aura, which already alters perception—the overall effect is a shift in how I experience space, color, and thought.
That shift isn’t comfortable. Most of it is disorienting and unpleasant. But within it, there was a brief window where my usual patterns loosened. And in that space, creative work felt easier.
Access, Not Creation
The work was already there—the conditions just changed
It’s important to be clear: the migraine didn’t “create” anything. The creativity was already there. What changed was how accessible it felt. The conditions removed some of the internal constraints I usually work within—habits, expectations, and self‑editing.
That’s not something I want to rely on. The cost is too high. But it does point to something useful.
If a change in mental state can affect how I access creativity, then there may be other ways to reach similar openness without the physical toll. It suggests that part of my creative process is limited not by ability, but by structure—how tightly I control the outcome, how much I filter while working.
There’s also a broader connection here. Decades ago, I had experiences with psychedelics that shifted how I saw the world and myself. Those experiences helped me let go of a lot of fear and rigidity. I don’t return to them now, but the perspective they opened up has stayed with me.
That perspective has been important in dealing with chronic migraine. The pain itself isn’t optional, but my response to it isn’t fixed. Over time, I’ve learned to manage the mental side of it—how much resistance I bring to it, how I interpret it, and how I move through it. That doesn’t eliminate suffering, but it changes its intensity and impact.
The recent experience fits into that same pattern. Even in a difficult state, there was a moment where something shifted—not into relief exactly, but into clarity of a different kind.
For me, the takeaway isn’t about the medication or the migraine. It’s about access.
The kind of creative flow I felt isn’t something external that I need to recreate through extreme conditions. It’s something internal that I was briefly able to reach under unusual circumstances.
Openness and Letting Go
When the boundary between experience and experiencer softens
There’s also a quality in that state that’s familiar from meditation. It’s a kind of openness where the usual sense of separation starts to fade. Instead of feeling like an observer acting on an experience, there’s just the experience itself—no clear boundary between the one perceiving and what’s being perceived. In that space, the need to control or interpret loosens, and the work unfolds more directly, without the usual distance between intention and action.
Working with Pain
Perspective, resistance, and what can shift
Another layer to this is perspective. The difference between being overwhelmed by the experience and moving through it often comes down to how it’s held. I wrote previously about the Four Noble Truths and the Eightfold Path as a framework for navigating chronic pain from migraine and lupus. What stands out to me now is how practical that framework is—not as philosophy, but as a way of adjusting perspective in real time.
When The Pain Takes Over
A reminder that practice isn’t always accessible
Pain is present. That part isn’t optional. But the added weight—resistance, fear, frustration—can shift depending on how tightly I hold the experience. That said, this isn’t always accessible. There are moments when the pain takes over completely. Last night was one of those times. I woke up in the middle of the night in severe pain after my first medication didn’t work. I couldn’t find my stronger medication, didn’t have my glasses, and ended up searching through cabinets, drawers, and bags in a panic. I knew that without it, I might end up in the ER—where the treatment helps, but comes with hours of discomfort and side effects. I was overwhelmed, in tears, and scared.
In moments like that, there isn’t much space for perspective or practice. But experiences like this also make something clear to me: without meditation, without the framework I’ve built from Buddhist practice, I would likely be living in that state of panic much more often. My commotion woke up my husband, who came in—calm, steady, not caught in the panic I was in. He found the medication, and he cleaned up the mess I had made searching as I went back to bed. That contrast stood out. It reminded me that while I can’t always access those tools in the moment, they still shape how I move through these experiences over time.
Returning to Openness
Creative flow, meditation, and another way of relating to experience
It’s not easy to stay open in the middle of persistent pain. In those moments, it’s hard to remember that the pain will pass—that it isn’t permanent. Pain forces attention into the present, but not calmly or intentionally. It can narrow everything down to urgency and survival. At the same time, it can act as a kind of teacher. It shows where resistance builds, where fear takes hold, and how quickly the mind tries to escape what’s happening. When I’m able to step back, even slightly, I can see it less as something to fight and more as something that reveals how I relate to experience.
What I keep coming back to is this: the experience changes depending on how I meet it. Not completely, not all at once, but enough to matter. And in those moments of openness, there is less separation—and a little more space for things to be as they are.
I painted this over six hours while medicated for a migraine, drifting in and out of focus. The haze loosened my usual self‑judgment, and the work shifted into something more fluid and intuitive. It’s not complete, but the evolution itself tells the story.
#acceptance #alteredStates #artisticFlow #awareness #BuddhistPhilosophy #chronicIllness #chronicPain #consciousness #creativeExpression #creativeProcess #creativity #eightfoldPath #flowState #fourNobleTruths #innerLandscape #innerWork #intuitiveArt #lettingGo #livedExperience #lupus #meditation #migraine #migraineAura #mindfulness #nondualAwareness #openness #painting #perception #personalEssay #perspectiveShift #presence #resilience #transformation -
Stigma isn't just a social problem. It's a public health issue.
Fear of judgment can prevent people from seeking healthcare, treatment, support, or even talking openly about their struggles.
Reducing stigma helps people access help sooner and more safely.
#MentalHealth #PublicHealth #EndTheStigma #Recovery #LivedExperience
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What is one thing that made you feel heard during your recovery or mental health journey?
For me, one of the biggest moments was when my family stopped arguing with me about what I was experiencing and simply listened. They didn't try to fix me, debate me, or tell me how I should feel. They just accepted that my experience was real and met me where I was.
That unconditional support has been integral to my recovery.
#Recovery #MentalHealth #LivedExperience #PeerSupport #FamilySupport
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Ottawa's supervised consumption sites are expected to close in the coming months.
People with lived experience have long warned that these sites provide more than overdose response: they offer safety, healthcare connections, trusted relationships, and a path to support.
Good policy starts by listening to the people most affected by it.
#HarmReduction #PublicHealth #LivedExperience #MentalHealth #DrugPolicy
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Why does harm reduction value lived experience?
Because numbers can measure trends, but they can't fully capture what it feels like to navigate addiction, mental illness, homelessness, or recovery.
Research helps us understand populations. Lived experience helps us understand people.
Effective harm reduction depends on both.
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Recent reflections on coursework reveal deep ethical friction regarding institutional power and vulnerable populations. Rehabilitation frameworks are sometimes taught without adequate critical analysis of the coercion embedded in their structures. Scrutinising these approaches matters because people entering recovery carry histories where power was already misused against them.
Evidence drawn from trauma research confirms that safety, active consent, and collaborative decision making form the baseline of any genuinely therapeutic environment. Bypassing these foundations does not accelerate recovery; it replicates the very conditions that compound harm. My own experience navigating systems that demanded compliance before offering access has made this concrete rather than abstract. Structures built on submission tend to silence the people they claim to serve.
Relational ethics and humanistic philosophy ask whether our practices actually produce human flourishing, asking not what is being done to someone but whether they are growing, healing, and recovering their agency. A programme can hold the best intentions and still leave people less free than when they arrived. Examining this gap between stated purpose and lived impact is where genuine ethical accountability starts. Good intentions must be interrogated, not assumed.[1]
Disability and lived experience teach hard lessons about how quickly care can turn into control when power goes unchecked. Peer support and community-centred models consistently show stronger long-term outcomes precisely because they distribute rather than concentrate authority. When recovery programmes genuinely respect autonomy, people are far more likely to remain engaged without coercion. Advocacy for evidence-based, person-centred models is not idealism. Decades of research back it.
#Ethics #TraumaInformedCare #LivedExperience #CounsellingStudent #AddictionRecovery #MentalHealth #EvidenceBasedPractice #PersonCentredCare
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A new hidden cost of accessibility I discovered this morning…
Today was supposed to be a day where I could get out and about through our local transit system. I was supposed to catch the cab out to my partner's work and the public bus home. Until we woke up and saw rivulets of rainwater flowing down our little side-street. A veritable downpour. I use forearm crutches (or a rollator) when I go out to shop, to wander, or to just be not at home. I have extensive issues with walking unaided--more than just normal clumsiness, I have been known to walk into […] -
The Journey of a Glass Child: Embracing Uniqueness
Growing up, I was always the "weird" kid who couldn't fit in, even with my own family, a round peg in a square, rigid hole. I preferred creative things like music, art, and writing, often spending time riding my bike or walking. This was quite different from my peers, who were into sports, the military, travel, boating, and horses—activities my family couldn't afford. So I stayed in my own world, where I was happy and content. My extracurriculars weren't the usual after-school sports. […]https://dreamspacestudio.net/the-journey-of-a-glass-child-embracing-uniqueness/
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NDIS research on social inclusion and community access found three things that matter here. First, skilled, individualised support, including support workers who understand a person’s needs and interests, is vital to enable participation. The lack of accessible transport remains a barrier. Negative community attitudes and poor understanding of disability can limit participation even when formal barriers are removed. Those findings describe my life exactly. It is support workers, not a better taxi app or a generic “community group”, that make my participation in life possible. They do not just “assist with transport" but bridge the gap left by the system. The fact that I can rehearse and maintain my health and mental health is directly tied to that support. The reforms focus on efficient funding and on aligning budgets with needs. However, “need” is being defined in a way that strips it of context. The need is not just “to get to an appointment but to arrive without burning so much energy on navigation that the appointment becomes another trauma. The need is not just “to attend rehearsal," but to be able to participate musically and socially, as a full member of an ensemble, in a way that honours the years of training and work that got me there. The NDIS itself acknowledges that community access and inclusion increase independence, confidence, and quality of life. It funds Assistance with Social and Community Participation as a core support, and Increased Social and Community Participation as a capacity-building activity.
Plans will be longer, and assessments will be standardised. Foundational supports will eventually be available nationwide. I remember the pre-NDIS life. I would once again struggle with the taxis that did not arrive, the appointments I effectively missed while physically presenteawith rehearsals becoming tests of endurance instead of joy. I know exactly what it would mean to lose my Monday, Wednesday, Thursday, and Saturday support. The government says these changes will make the scheme fairer, more consistent, and more sustainable. Maybe some aspects will. Longer plans could mean less constant paperwork, and standardised assessments could fix some inequities. Foundational supports could help children who currently fall through the cracks. But none of that is guaranteed and does not justify ignoring the people whose lives are most directly on the line. When I say I am scared, it is not because I am resistant to change. I know what it cost me to get from that first version of my life. #NDIS #DisabilityRights #DeafBlind #CommunityAccess #LivedExperience #NeurodivergentRights #AutismAustralia #DisabilityAustralia #FoundationalSupports #ThrivingKids #InclusionMatters #AccessForAll (2/2) -
Do you want to help prioritize ME/CFS research studies? Then this survey is for you!
Open Medicine Foundation (OMF) has a new clinical trials program, CTN Lite, and they want your input.
"CTN Lite Patient & Caregiver Survey: Shaping the Priorities of OMF's Clinical Trials Network"
https://docs.google.com/forms/d/e/1FAIpQLSeTmvjcIAM9xWEIvJXuBx_L99wmBHqwYuJ2xOwjQOtGkZl8Zw/viewform
ME/CFS patients (regardless of trigger) & caregivers can take this survey (about 20 minutes long), available until May 15.
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We’re excited to announce our upcoming #Opioid #Archive National Symposium, Tues, May 12 – Thurs, May 14. Check out the lineup of speakers on topics including #HealthJournalism #HealthPolicy #Epidemiology #DataScience #Archives #ArtificialIntelligence #HistMed #ScienceHistory #HarmReduction #LivedExperience https://oida-resources.jhu.edu/oida-national-symposium-2026/
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MY|THROAT|A|ROAR
LIVE
Die Boxen brüllen die Riffs
Eine lärmige Erstürmung der Herzen
Geballte Vokale umarmen als Stroboskopblitz
Dieser Augenblick ist auf ewig zentriert
LIVE
The speakers roar the riffs
A raucous assault on hearts
Closed vowels embrace like a strobe light
This moment is forever centered
#fuckinghappy #supportindependentmusic #mythroataroar #poetry #lyrik #metalhead #live #livedexperience
Welcome to the show:
@[email protected]
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"Hearing from people with lived experience matters."
Said at the AICD Governance Summit in the context of serious matters like sexual harassment — and it applies equally to disability discrimination.
Boards without disabled people in the room will handle disability complaints differently. That gap has real consequences.
Representation changes outcomes.
#LivedExperience #DisabilityInclusion #Governance #BlindLeadership #A11y
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MY|THROAT|A|ROAR
The Next Gig [My Wish]
Amplifier feedback roar
And the crowd jumps
Euphoria-tested frenzy
Stacato steeled with melodies
Strobe heartbeat embrace
Centered in our souls
A somewhat crazy text, but that's what I wish you for your next performance.
@[email protected]
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The Next Gig [Mein Wunsch]
Verstärkerrückkopplunggedröhn
Und die Meute springt
Euphoriegetestetobsucht
Stakato gestählt mit Melodien
Stroboskopherzschlagumarmung
Zentriert in unseren Seelen
#fuckinghappy #poetry #lyrik #poem #mythroataroar #supportindependentmusic #livedexperience