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A Life Hidden

@a.lifehidden

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Reflections on life within the constraints of severe illness

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I’ve not shared a post like this before.

I’ve written many times about the grief, isolation and losses that come with chronic illness. But never directly about the experience of living in a body that continually demands so much of you.

If you live with chronic illness, I hope it helps you feel understood.

And if you don’t, I hope it offers a glimpse into something that’s often hidden.

l’d love to know whether any part of it resonated with you.

👉🏻 Link in bio and stories

🔷🔷🔷🔷🔷🔷🔷

Slide 1: Being ill is hard. What an obvious thing to say – and yet how often it goes unspoken.

Slide 2: There’s often a deep stoicism in those of us who have known lengthy illness: a quiet acceptance of bodily suffering that conceals its true burden.

For our own survival, we’ve learnt to normalise feeling unwell.

We measure our symptoms not against the healthy body, but against its worst potential.

Slide 3: Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear.

#chronicillness #mecfs #disability #chronicpain by @a.lifehidden

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3 months ago

I’ve recently updated the What Is ME? page on A Life Hidden, to include developments such as the DecodeME study.

A number of people have said that they’ve found this page useful to share with family, friends and professionals.

👉🏻 Link to full article in bio and stories

#meawareness #mecfs #myalgicencephalomyelitis #chronicillness #chronicpain

Slide 1: A person lies on their side in bed, looking away from the camera. A curtain is drawn across the window, with a small chink of light coming through.

Slide 2: ME (myalgic encephalomyelitis, also known as ME/CFS) is a serious, chronic illness, often triggered by a viral infection. Around 400,000 people in the UK and millions worldwide are thought to be affected.

Slide 3: Research has been greatly underfunded and little is known about the mechanisms involved in the illness. However, the DecodeME study, published in 2025, pointed to the involvement of the immune and nervous systems, and indicated that susceptibility to ME is partly genetic.

Slide 4: The most severely affected are completely bedridden and might require tube feeding, catheterisation and morphine.
Sensitivities can be so acute that even the presence of another person in the room can cause a worsening of symptoms.

Slide 5: Many within the medical profession remain ignorant as to the severity of
ME; others are openly hostile and dismissive. Even those who are sympathetic are often unable to respond to the complex needs of the most severely affected. The result is that some of the most seriously ill patients in society are left without anything resembling appropriate medical care. by @a.lifehidden

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5 months ago

“To be ill is to mourn the person we once were, and all we might yet have been.”

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.

“It’s often the simplest words that have meant the most to me in my need. The sincere enquiry as to how I am. The gentle acknowledgment that I have lived through something huge.”

And how a parcel of dried fruit from a stranger on the other side of the world reminded me of something important:

“We never truly know how far our lives reach, or how we touch the wider world. No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine.”

For everyone feeling invisible as we approach #meawareness week - this is for you. #mecfs #chronicillness #chronicpain #severeme

👉🏻 Link to full post in bio and stories

ID in comment by @a.lifehidden

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5 months ago

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.

👉🏻 Link to full post in bio and stories

Quotes from the slides:

Slide 1: 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.

Slide 2: There is a strong societal expectation that any hardship in life must be overcome. We speak of illness as a battle, with winners and losers; of grief as a temporary state from which we must move on. In reality life’s greatest challenges shape us forever, and more realistically must be lived with rather than defeated.

Slide 3: It’s possible simultaneously to be full of gratitude for the small treasures in my life, and full of sorrow for the fact that I need to be. I can give heartfelt thanks for the progress I’ve made, while mourning the loss of so much that life should have offered. I can feel dizzy with joy at the rediscovery of a simple ability, and raw with regret at the reminder of all I’ve missed out on. It doesn’t have to be one or the other.

Slide 4: 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.

#chronicillness #chronicpain #severeme #myalgicencephalomyelitis #grief #loss #gratitude

[ID in comments] by @a.lifehidden

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a year ago

As we approach #MEAwarenessWeek, a new blog post that is nothing to do with raising awareness and everything to do with recognising the courage that exists within our community.

It acknowledges those who have lost their lives, those who have not improved, and those who have experienced progress - along with the loved ones who witness it all.

“Courage exists in the darkest of places: this is something that deserves to be known.”

👉🏻 Link to full post in bio and stories

Slide Text in comments.

[Image description: A crescent moon in a starlit sky, over a snowy mountain. Photo by Benjamin Voros on Unsplash.] by @a.lifehidden

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a year ago

I’m re-sharing a post on New Year that I wrote a few years ago, but which is no less relevant today.

👉🏻 Link in bio

Quotes from the slides:

“The division between December and January is an artificial one: there is no junction at the year’s end on which fortune hinges; no window of transformation, either for good or ill. Instead, within each and every day lies the complex spectrum of human experience, with its potential for both darkness and light.”

“My life is mixture of loss and sorrow; of happiness and fulfilment. Of overwhelming restriction, and of important gains within those parameters. I have grown immeasurably as a person, though I wish that that growth had not been shaped so greatly by suffering. I feel gratitude and I feel anger. I have hope and I am afraid. I am in multiple places all at once.”

“I find it helpful to think in terms of seasons. To see myself as part of the continuous cycle of nature as it moves between darkness and light; dormancy and growth. The blackest night does not preclude the onset of dawn; the most bitter winter contains the seed of spring. All are part of the same whole.”

Wishing everyone a 2025 that brings peace and hope.

[ID: Greg Rakozy on Unsplash. A silhouetted person looks up at a star-filled sky.] by @a.lifehidden

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2 years ago

(Reposting this piece from 2022)

At Christmas, perhaps more than any other time of year, it can be easy to lose sight of our own worth. To be swayed by impossible ideas of how we should be, while forgetting to give credit for all that we are.

Even healthy people feel pressure to achieve perfection at Christmas. And when severe physical compromise is the starting point, there can be a strong sense of falling short. It can be tempting to see ourselves as having failed, simply for being unable to participate in Christmas in the way that we would wish. I see friends on social media apologising for being unable to choose presents or write cards. Others feeling they’ve let everyone down through being too ill to have visitors.

This year I myself have felt especially guilty about my ongoing inability to contribute to all the Christmas preparations. I’ve felt responsible for the restrictions on my family, who continue to be cautious in order to protect me from c*v!d. And l’ve beaten myself up for times when I’ve been overwhelmed and emotionally messy - as though I ought to be able to skip through Advent in a state of calm and ordered bliss.

Special occasions like Christmas can evoke many emotions. Limitations are amplified. Losses that might be bearable at other points in the year can take on a greater edge of pain. And hope can rise up and be scary to embrace. Allowing space for grief and regret is important - as is recognising that none of it signifies personal failure. On the contrary, the very opposite is true: enduring the hardships of lengthy illness demands the greatest inner strength.

⭐️ Continued in comments, or read the full piece on my website. Link in bio. ⭐️

[ID: Aaron Burden on Unsplash.
A bubble, with icy patterns on the surface, rests on the branch of a tree.]
#Christmas #chronicillnesslife #myalgicencephalomyelitis #severeme by @a.lifehidden

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2 years ago

Recovery stories have been popular in the media lately. My thoughts on why, unless carefully handled, they can be distressing for the very people they seek to support.

👉🏻 Link to full piece in bio.

👇🏻 Some quotes below.

“In any story of recovery or improvement, there will always be a sound helping of good fortune. I have friends who have died; others who have endured the most extraordinary levels of pain and suffering for endless years, without respite: all of them have done everything within their power to try and get better.”

“The silent story for most of us is that we “decided to get better” but couldn’t; started doing a little more each day but had a relapse; tried yet another treatment and found it wanting; and then, having lost everything, built the best life we could from the ruins.”

“If all you can do today is breathe and cling on, that is an act of courage and daring. And one worthy of all the column inches in the world.”

ID and credit in comments
#myalgicencephalomyelitis #mecfs #severeme #chronicillness #chronicpain #chronicfatigue #chronicpainwarrior #chronicillnessawareness #recovery by @a.lifehidden

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2 years ago

“It is hard to express the frightening sense of vulnerability engendered by being severely ill, and yet having genuine reason to fear the very system that is supposedly there to help.”

My new blog post reflects on Maeve’s inquest, and all it has revealed about the way that ME sufferers are treated.

👉🏻 Link in bio.

My thoughts are with everyone who has struggled hearing the details of how Maeve died. And most of all with her family - their courage has been extraordinary.

“With a few extremely rare exceptions, I do not believe that anybody enters a career in medicine with a wish to harm those in their care. Yet when doctors and nurses are faced with patients who do not fit neatly into pre-defined boxes, that is very often the end result. A strong culture exists within medicine whereby patients whose symptoms do not conform to an expected pattern, or whose test results fail to demonstrate exactly what is wrong, or whose bodies do not respond to treatment in the normal way, find themselves held responsible for their own suffering. A doctor’s frustration or fear can very quickly transmute into blame.”

#maeveinquest #severeme #severemeawareness #chronicillness #chronicpain

[ID: A close-up shot of forget-me-not flowers. Yoksel Zok on Unsplash] by @a.lifehidden

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2 years ago

“In the same way that someone in financial poverty must avoid any expenses beyond their carefully allotted outlay, in my state of health poverty I will always be forced to budget on a scale that is unimaginable to those in health abundance.”

It’s been a couple of years since I wrote about the pandemic. My new blog post (link in bio and stories) explains why, for so many of us, it’s necessary to remain covid cautious - something which has become increasingly difficult as the world has returned to normal.

I hope that this piece will offer insight to those who might not understand the need for ongoing caution, and solidarity to those who know only too well.

“Nowadays self-protection can feel like a radical act, and even a source of shame. Having my limitations respected and understood means more than can be said.”

👉🏻 Link to full piece in bio

[Image credit and description in comments]

#ChronicIllnessLife #ChronicIllness #ChronicallyIll #SpoonieLife #Spoonie #SpoonieCommunity #SpoonieWarrior #SpoonieSisterhood #DisabilityLife #DisabledBlogger #Disability #DisabilityBlogger #MECommunity #PWME #MECFS #CFSME #MEAwareness #MyalgicEncephalomyelitis #MyalgicE #ChronicIllnessAwareness #ChronicIllnessCommunity #MyLife #MECFSWarrior #LivingWithME #WheelchairUser #WheelchairLife #CanYouSeeMENow #BabeWithAMobilityAid by @a.lifehidden

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3 years ago

“For most of my life, I have lived under the shadow of other people’s narratives about me and my illness. Physical pain leaves lasting scars, but perhaps the deepest wounds are those that come from being held responsible for that suffering.”

This is from my latest blog post, on the lasting impact of being doubted and disbelieved when severely ill. (Link in bio.) I’ve noticed that accounts of medical abuse tend to focus on the physical repercussions. I’ve written instead about the profound emotional consequences, and also the work I’m doing to rediscover my real self.

“It turns out that nearly everything I thought I knew about myself was wrong, or at the very least badly distorted. Finally, after a lifetime of being lost in other people’s stories about me, I am hearing the words of truth that reside in my own heart.”

I hope this might be of help to others walking a similar path. Thinking of you all, especially those for whom this is a difficult time of year.

👉🏻 Link to full post in bio

[Image description and credit in comments.]

#ChronicIllnessLife #ChronicIllness #ChronicallyIll #SpoonieLife #Spoonie #SpoonieCommunity #SpoonieWarrior #SpoonieSisterhood #DisabilityLife#MECommunity #PWME #MECFS #CFSME #MEAwareness #MyalgicEncephalomyelitis #MyalgicE #ChronicIllnessAwareness #ChronicIllnessCommunity #MyLife #MECFSWarrior #LivingWithME #WheelchairUser #CanYouSeeMENow by @a.lifehidden

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3 years ago

Updating the In Memoriam page is undoubtedly the hardest part of running my website. At the beginning of the year I lost two friends - Kara and Anna - and it has taken a couple of months for me to feel able to do justice to their memory here.

Even writing this post I find myself struggling for words in a way that is unusual for me. I want to say something that encapsulates all the emotions that loss like this brings - and yet words seem so inadequate.

And so, for today, I simply direct you to my memories of two special young women. One was a close friend; the other less well known to me. Both touched my life and will never be forgotten.

You can read more about Kara and Anna here. I hope that my tributes stand as a celebration of their lives, while also bearing witness to the fact that they died.

👉🏻 Link in bio

#ChronicIllnessLife #ChronicIllness #ChronicallyIll #SpoonieLife #Spoonie #SpoonieCommunity #SpoonieWarrior #SpoonieSisterhood #DisabilityLife#MECommunity #PWME #MECFS #CFSME #MEAwareness #MyalgicEncephalomyelitis #MyalgicE #ChronicIllnessAwareness #ChronicIllnessCommunity #MyLife #MECFSWarrior #LivingWithME #WheelchairUser #CanYouSeeMENow by @a.lifehidden

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4 years ago