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.

Adam@abrokenbattery.bsky.social · 2w ago

“Every aspect of living is impossible because it just aggravates the symptoms and makes you even more ill.” Interview with @naomiwhitt.bsky.social, describing life with Severe ME when she was unable to move and even the smallest sensory input could cause lasting deterioration. #MECFS

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

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

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.

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…

alifehidden.com

1)A reflection on chronic illness, isolation and feeling forgotten by the world. But also a look at the quiet ways in which we can be reminded that our lives still matter. alifehidden.com/2026/05/10/n...

You Are Not Forgotten: The Gift of Being Remembered

You are not forgotten.  How powerful four words can be.   They tell us that we are still part of the world; that our lives matter; that we are held in the hearts of those who know us, eve…

alifehidden.com

"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

“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

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…

alifehidden.com

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...

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…

alifehidden.com

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...

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…

alifehidden.com

🧵 "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/

🧵 "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/

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.

Miles W. Griffis@mileswgriffis.bsky.social · last yr.

Late singer Kara Jane's family has released her album "In Limbo" posthumously on #SevereMEday 💙. Read more about Kara, the album, and the impact of severe ME in this wonderful article by @naomiwhitt.bsky.social in @thesicktimes.org. thesicktimes.org/2025/08/08/p...

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)

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.  …

alifehidden.com

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)

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.  …

alifehidden.com

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)

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…

alifehidden.com

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

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.)

The Sick Times@thesicktimes.org · 2y ago

Recovery stories take on a particular sensitivity when they relate to an illness that has consistently been belittled and denied. Naomi Whittingham writes about her own experience with the complex reality of ME recovery & the trouble with recovery stories. bit.ly/3YRsP5n

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.