iiinova — where your digital self keeps evolving

Reposted by Naomi Whittingham

sarah boothby @swastrosarah.bsky.social · 26/09/2026

"the reality that when trust in one’s own body has been shattered, life will always have a hum of background fear. Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear." @naomiwhitt.bsky.social 🙏🏼🫂😔 #ME #LongCovidME

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Naomi Whittingham @naomiwhitt.bsky.social · 30/08/2026

An extract from an interview that my family and I did with Radio Bristol in 2015. Link to the full interview in the comments. And a big thank you to @abrokenbattery.bsky.social for being a such a great resource for ME-related media items.

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Reposted by Naomi Whittingham

Tom Kindlon @tomkindlon.bsky.social · 13/08/2026

A Life Hidden @naomiwhitt.bsky.social : The Burden of Chronic Illness That I Rarely Talk About alifehidden.com/2026/07/30/b... Screenshot from latest Science for ME weekly update #chronicillness #MEcfs #PwME #CFS #ME #MyalgicE

A Life Hidden The Burden of Chronic Illness That I Rarely Talk About
Naomi Whittingham writes beautifully and insightfully on the harsh existence of chronic illness:
"Those who see me at my laughing, smiling best could never imagine the delicate balancing act behind every moment. The impossible decisions over what is too much or not enough; the silent background calculations as to how close I might be to collapse. There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present."
Article l Thread

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Reposted by Naomi Whittingham

Tom Kindlon @tomkindlon.bsky.social · 10/08/2026

Beautiful writing from @naomiwhitt.bsky.social 's A Life Hidden: "The Burden of Chronic Illness That I Rarely Talk About" alifehidden.com/2026/07/30/b... "Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear" #MEcfs #PwME

My symptoms may no longer be continually active, but the potential for them remains a constant presence. Those who see me at my laughing, smiling best could never imagine the delicate balancing act behind every moment. The impossible decisions over what is too much or not enough; the silent background calculations as to how close I might be to collapse. There is always sacrifice: always a demand from past or future that necessitates a scaling back in the present.

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Naomi Whittingham @naomiwhitt.bsky.social · 30/07/2026

I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.

alifehidden.com

The Burden of Chronic Illness That I Rarely Talk About

Being ill is hard. What an obvious thing to say – and yet how often it goes unspoken. I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…

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Reposted by Naomi Whittingham

Tom Kindlon @tomkindlon.bsky.social · 27/10/2025

"On Gratitude and Grief" by Naomi Whittingham @naomiwhitt.bsky.social (A Life Hidden) alifehidden.com/2025/10/20/g... Screenshot from latest Science for ME weekly update #SevereME #MEcfs #chronicillness #Spoonie #CFS #PwME

A life Hidden On Gratitude and Grief
A beautifully written blog post with poem by Naomi Whittingham who has suffered from ME since 1990
"The ability to balance great sorrow alongside genuine joy, while not allowing one to overwhelm the other, is perhaps one of the most important learnings of being human."

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Reposted by Naomi Whittingham

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 25/10/2025

“Grief sits heavily indeed when it must be stared full in the face, day after day. But joy, conversely, soars high in a life stripped bare. How intense is the beauty of the sky or a spring flower when days are bleak.” Another beautifully written blog by @naomiwhitt.bsky.social

alifehidden.com

On Gratitude and Grief

Through many years living with severe illness, I’ve come to know a lot about emotions. From the sorrow and regret of a life lived so differently to anything that might have been chosen; to th…

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Reposted by Naomi Whittingham

Naomi Whittingham @naomiwhitt.bsky.social · 20/10/2025

My new blog post on gratitude, grief - and the challenge of finding balance between the two. Although this is written from the perspective of living with long-term illness, I hope it will resonate with people in many different life situations. 🧵(1/5) alifehidden.com/2025/10/20/g...

alifehidden.com

On Gratitude and Grief

Through many years living with severe illness, I’ve come to know a lot about emotions. From the sorrow and regret of a life lived so differently to anything that might have been chosen; to th…

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Naomi Whittingham @naomiwhitt.bsky.social · 20/10/2025

alifehidden.com

On Gratitude and Grief

Through many years living with severe illness, I’ve come to know a lot about emotions. From the sorrow and regret of a life lived so differently to anything that might have been chosen; to th…

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Reposted by Naomi Whittingham

Tom Kindlon @tomkindlon.bsky.social · 07/10/2025

🧵 "Glimpsing the World: My Joy and Pain" (2019) by Naomi Whittingham @naomiwhitt.bsky.social , who has had #severeME for decades alifehidden.com/2019/07/26/g... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/

Glimpsing the World: My Joy and Pain
Posted on 26th July 2019by Naomi Whittingham
A rocky shoreline, with waves gently breaking on wet sandThere is an indescribable joy in experiencing the outside world after many months or years of incarceration. The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze. When darkness and isolation have been the foundation of life, these simple experiences are cherished. There can even be beauty in less obvious places: I have felt wonder on seeing things like traffic lights and motorway signs. To the housebound eye, these sights are the pulse of a living, active world. As such, my heart seizes them.

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Reposted by Naomi Whittingham

Tom Kindlon @tomkindlon.bsky.social · 04/10/2025

🧵 "The Trouble With Recovery Stories" by Naomi Whittingham @naomiwhitt.bsky.social (with severe ME for decades) alifehidden.com/2024/11/05/r... An excellent, articulate article discussing “Recovery Stories” and the complex impressions and impacts they bring about #MEcfs #CFS #PwME 1/

The Trouble With Recovery Stories
Posted on 5th Nov 2024

Photo of somebody up a tall mountain near the edge

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Naomi Whittingham @naomiwhitt.bsky.social · 14/08/2025

Thank you to @thesicktimes.org for giving me the opportunity to share Kara’s story with a new audience. Do take a moment to learn about her and discover her beautiful music.

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Reposted by Naomi Whittingham

Naomi Whittingham @naomiwhitt.bsky.social · 07/05/2025

As we approach #MEAwarenessWeek, a piece recognising the courage that exists in our community. It acknowledges those who have lost their lives, those who have not improved, and those who’ve experienced progress - along with the loved ones who witness it all. alifehidden.com/2025/05/07/c... (1/7)

alifehidden.com

Courage Exists in the Darkest of Places

Today I updated my In Memoriam page, commemorating two friends who have died in the past nine months. It’s a page I always update with reluctance: my heart is heavy and I struggle to find words. …

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Naomi Whittingham @naomiwhitt.bsky.social · 07/05/2025

alifehidden.com

Courage Exists in the Darkest of Places

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Naomi Whittingham @naomiwhitt.bsky.social · 31/12/2024

I seem to have gained a number of followers here, despite having posted virtually nothing! Thank you to everyone who has followed me - I hope to be more active in 2025. I begin by sharing a post on New Year that I wrote a few years ago. (1/4)

alifehidden.com

Is There Hope in a New Year?

Life has made me wary of looking too far ahead. Even before the turmoil of 2020, my road was one of uncertainty. New Year has long felt like standing on a cliff edge and looking down: t…

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Naomi Whittingham @naomiwhitt.bsky.social · 29/11/2024

@bob-hawkins.bsky.social Thank you so much for your weekly Substack updates. They’re greatly appreciated.

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Naomi Whittingham @naomiwhitt.bsky.social · 14/11/2024

There’s been a huge response to my latest blog post - thank you for all the support. This week it’s been republished in The Sick Times. (My original post is below.)

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Naomi Whittingham @naomiwhitt.bsky.social · 11/11/2024

Thought I’d have a look and see what it was like here. So far I’ve had photos of birds, stars and the ocean. Not a single ad or argument. I could get used to this.

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