The Bed Perspective

We don’t talk enough about the trauma caused by chronic illness - so I wrote a song about it

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Did you miss?

My debut single is out! Salem: A song for the disbelieved

Meditation: Stepping into belonging

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Are you looking for all music? Click here

I was equating productivity with my worth as a disabled person and am still trying to let it go

Madelleine Müller (she/her) — Wed, 20 Aug 2025 08:54:32 GMT

My debut album will drop on September 5 (I had to push it a week, because of fatigue)! You can presave it here • My new single is out! It’s called I Can’t Run When I’m Dreaming and is a song about medical trauma. Listen and read more here, or listen while you read:

Photo by Content Pixie on Unsplash

A few years ago, one of the neo-liberal Danish politicians ran a campaign with the slogan “You can do it!” The life coach-ey rhetoric was a nudge to people living on welfare benefits to ‘just get a job’ and the underlying message was to cut welfare benefits.

I decided to comment on one of the campaign’s Twitter posts. I said: “But I can’t do it. I can’t wash my own hair, I can’t walk more than ten metres, I can’t cook my own food, I can’t leave the house.”

Then some follower, who had looked at my profile, said: “But you CAN! You have had essays published and you write songs!”

His reply pissed me off.

Do we really have to produce in order for our lives to matter? We have to sing and dance for you in order to be deemed worthy? In order to receive our rightful benefits so we can live our lives? And do we really need cliché pep-talks from abled people?

The ‘worthy disabled person’ — according to Western capitalist social norms — is someone who is productive despite their limitations. Someone who rises above it all and contributes materially to society.

For many years I bought into this ideal. I worked my butt off trying to stay afloat in my online coaching business while my body slowly deteriorated. While a large part of my determination to stay in business stemmed from a deep desire to continue working, another part of me kept working in order to maintain a sense of worth as a human being — and to avoid the paternalistic nightmare our welfare system has turned into.

Striving for worthiness and value was like an invisible force within me. It made sure I overheard my body’s limitations too, because that force hates limitations. It hates anything that gets in its way.

I had to do a lot of inner work on finding and accepting my innate value as a human being. I remembered my human rights training at university and how the foundation of said rights is based on the philosophy (I want to call it fact) that every single human being has intrinsic value regardless of their status, sexuality, gender, capabilities and so forth.

Every. Single. Life. Matters.

It was difficult at first. I have always identified myself through my work and how well I performed. But somehow, the more I accepted my disability and the state of my body, I slowly began to understand and feel my intrinsic value:

I am valuable to the air we breathe. I am valuable to the field of love, empathy and compassion in our universe. I am valuable to this world by the mere existence of my being.

I don’t feel this innate value all the time. I have days when I fall into the old trap of feeling worthless and with no value, and then there are days where I am more connected and I feel a sense of worth and value.

This doesn’t mean I won’t produce — or try my best to. But my inner work involves separating my worth from my productivity.

While producing and recording my album, the old worthiness trap resurfaced in major ways: If it wasn’t good enough, it meant I was not valuable — especially as a disabled person.

I had to separate my sense of worth and value from the work I was doing. I was putting too much pressure on myself and it only made me depressed and anxious. I am still working on creating this separation between my worth and productivity.

I’ve said this before and will reiterate: Disabled people’s lives matter whether we can or can’t. We are worthy members of society whether we produce or don’t. Our lives are meaningful whether we do stuff or don’t.

Tell me…

Have you managed to separate your worth from your productivity?

Do you wish you could be more productive — just for the fun of it?

I’d love to know your thoughts!

I wasn’t suicial, I just wanted peace

Did you miss?

A conversation with Madelleine Müller on making music from bed, grief as practice and reclaiming enoughness

Why chronic illness pacing is political

Meditation: A self-compassion pause

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My new single is out! It’s called I Can’t Run When I’m Dreaming and is a song about medical trauma

Ever since I got severe ME/CFS I lost the ability to run in my dreams (and in real life). I would maybe start the run inside my dream, but immediately remember that I’m sick and that it’s not something my body can do. I would then fall down, unable to move.

I can’t run when I’m dreaming is a song about the trauma of losing your body and about being hidden from life by a debilitating neuroimmune illness (ME/CFS) and contemplating life and childhood memories when pain feels like an eternity.

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp to support the cause.

We don’t talk enough about the trauma caused by chronic illness - so I wrote a song about it

Fri, 08 Aug 2025 06:16:13 GMT

I’ve chosen to release this single on severe ME day, because it talks about the trauma and isolation of living with severe ME — something I’ve lived with since 2017 (I’ve had ME since 2011). Very little is known about how trauma and isolation affects those of us living with severe ME and how we can be supported to live with this trauma, or self-restore even though we live with the cause of our trauma daily.

Severe ME affects roughly 25% of people living with ME/CFS and our function is compromised so much that we are either house- or bedbound, often unable to do basic self-care activities unaided. You can read more about living with severe ME here.

Purchase or stream here

All income for the first year (possibly more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.

If you can’t listen to music, then here are the lyrics.

Lying in bed day in and day out, in isolation from the world, not knowing when it will end feels like an eternity and I would often (and still do) fear for my sanity:

Last night I dreamt of eternity

It was wet and cold and all too bright

There in the distance was my sanity

But something held me back

I would have dreams where I was forced to flee from something (often war or burning buildings or someone chasing me) and my legs just wouldn’t do what they were told. It was like trying to run through quicksand or black cotton mud. Or they would work at first, but then I would remember, in my dream, that I’m not in fact able to run or walk normally and then my legs would stop working. I would often wake up screaming inside my mind:

I try but I can’t run when I’m dreaming

I’d lie if I told you I’ve stopped screaming

In my sleep

I’ve now realised that these dreams were a reaction to the trauma I was experiencing of losing more and more function in my body. I often had episodes, in the real world, where my legs would suddenly stop working and I couldn’t move. I didn’t understand why my body was deteriorating so rapidly. It felt like my body was free-falling and eventually I became bedbound.

I also often woke up screaming inside my mind at doctors who wouldn’t listen, who wouldn’t acknowledge my needs or who didn’t understand the severity of what was going on. Trauma from medical gaslighting is real and it’s something we don’t talk enough about.

Not truly understanding what was really happening to my body felt like losing complete control — and I felt like it was my fault. I was too sensitive for this world was what I was often told (and I bought into and believed) in the early stages of my illness, when in reality I had a biological illness:

When I was younger I was often mistaken
Other’s feelings for my own

The girl in me she was forsaken

I lost myself to them

I am a sensitive being and I used to mistake others’ emotions for mine, but none of this created my illness. I lost myself when I believed that my sensitivity and empathy were the cause of my illness — I felt like every part of my personality, my Self and soul, was wrong and broken.

I would often think back to a vision I saw when I was a child:

When I was a child I saw

A lady with long dark hair
Transparent skin hovering two inches in the air

I often wondered if she was my guardian angel or just a ghost not knowing she was still stuck in between worlds. I remembered the long dark hair, because it reminded me of my mother’s when she was young. The ghost (or angel) wore a long yellow dress with flowers on them and she felt pleasant and safe. I was not scared to see her.

I have chosen to make her my guardian angel, because I needed one at this troubling time.

This song was originally called ‘Two Worlds Apart’, because I felt stuck between two worlds. In my mind I could do all kinds of things, but in reality I was stuck lying down. I started writing it when I still had moderate ME.

I didn’t like the melody of the original chorus nor the lyrics. Something didn’t click. A few years after I wrote the original song — and when my body had moved into the severe category of ME/CFS — I finally discovered what the song was really about and I could write the chorus and pre-chorus. I finally understood the song was about trauma and about losing control, losing the body and being hidden away, wondering if this pain will go on for an eternity.

Jonas Müller (my brother) plays the piano and Matthew Adomeit plays the bowed double bass. François Perdriau has mixed the song and Pete Maher has mastered it. I feel so incredibly lucky to be able to have my song accompanied by such excellent musicians. They really brought out the vibe in the song.

All proceeds for the first year (probably more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp and iTunes and by sharing as wide and far as possible.

Purchase or listen here

Tell me…

Are you affected by chronic illness isolation or/and trauma? How do you cope with it?

Have you ever seen a ghost?

What are your favourite lines from the song? Here are the lyrics

I’d love to know in the comments below.

My debut single is out! Salem: A song for the disbelieved

Did you miss?

When doctors turned their backs on us, I wrote this song

Meditation: Connecting to the Earth

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

I want you to know…

I’ll be sending out my entire album in a month’s time. I don’t know what my energy levels will be like during this period as I’ve never tried this before. I’m expecting lots of emotions during this release time and emotions can be taxing.

So please bear with me during this upcoming period. I will most likely veer off schedule and I cannot say how often I’ll be sending out essays or meditations.

It took me more than 30 years to find my place in the creative world — and then chronic illness hit

Madelleine Müller (she/her) — Wed, 30 Jul 2025 09:04:14 GMT

My debut album will drop on August 29! You can presave it here • My new single is out! It’s called Where Cold Hearts Go To Pray and is a song about escaping the emotional and physical pain of chronic illness. Listen and read more here, or listen while you read:

Photo by Marius Masalar on Unsplash

My six and a half years older brother had just won second place in the European Steinway piano competition. We celebrated at the home of family friends and everyone asked my brother to play a piece. I don’t remember what he played, but it was flawless, dexterous and most likely Mozart or Beethoven. He was only ten.

When he was done, and while people were still clapping, I got up, grabbed my father’s hand and dragged him up to the made-up stage in the corner of the living room and I started belting “Langt oppe bag Norges kyster,” a Scandinavian folk song reminiscent of Romeo and Juliet where a widower’s daughter and a sailor drink poison in the end to be together.

I was enjoying myself, but everyone started laughing. They were rolling around on the ground. Slapping the floor with their hands.

I forget this memory, but I saw it on video in my twenties and I realised that was the day I decided it was unsafe to express myself creatively.

I have written songs since I was twelve years old, but I always felt embarrassed by them, ashamed even, like I was not supposed to create music. I was good at playing from sheet music — even though it bored me — yet I longed for a creative life.

I don’t remember when the last time I picked up my flute was. I think it was in my late teens. I had attended efterskole, a kind of creative boarding school before high school, where I played flute in a band and in our annual musical, and sang in the choir. We were a group of students who were serious about music and our music teacher helped us to prepare for musical college.

One of the requirements was ear training — something I sucked at. At that time, we had a computer program that would play random notes and we had to guess which interval it was playing. I couldn’t get anything right and those blip blip blips of random notes didn’t make sense to me. Again, here was proof that I wasn’t meant to have anything to do with music.

My grandmother died in my late twenties, and my family and I attended the funeral. I was the only one singing the hymns — well, I and the priest — and after the service my grandfather told me: “You have a beautiful voice, I hope you do something about it.” I loved singing, and my favourite pastime was to sing songs while I accompanied myself on the piano (I had taught myself). I did this with closed doors, because it was just a hobby — not something I felt I was meant to do. Something sparked in me when my grandfather told me my voice was beautiful, but it would still take a few more years before I did anything about it.

I remember, in my early thirties, when I was living in Tanzania, I would visit my friend, a successful singer-songwriter and musician, and we would sit in his studio and listen to his songs, commenting on this and that, and I felt strong pangs of jealousy. I longed for a creative life, yet I had decided long ago that I wasn’t creative.

When I became ill with ME/CFS, also in my late twenties, my throat started to hurt every time I used my voice. I sought out a voice teacher a few years later — when I had returned back to Denmark from living in Tanzania — and during our first lesson, my voice teacher said: “I can see you have a lot to tell the world.”

That did it! I had finally gotten the nudge that I needed.

I went home that day and I wrote a song. It sucked, but I was hooked. From setting up my online coaching business and learning marketing and sales, I had finally learnt that skill is developed, it is something you work on, one step at a time.

Yes, some people are born with a natural talent, like my brother who played flawless Mozart at the age of ten and played in adult jazz bands by the time he was fourteen, but for the rest of us it doesn’t come as easy and has to be worked hard on (this is not to say my brother didn’t work hard, but he was at a completely different level).

I took singing lessons, I played the flute again, I studied songwriting and wrote more songs and at some point I noticed they were damn good. I had finally found my place in the creative world. This was my thing. And I felt good at it.

But just as I was getting into it — practicing my etudes on the flute, singing scales and doing various vocal exercises, training my ears with better software, and learning composing and accompaniment skills — my body started to deteriorate quickly and less than two years later I was mostly bedbound. I haven’t been able to practice since.

It’s difficult for me to express the grief at having found my thing in life only for it to be taken away. While I can still write and record songs, my ability to improve my musical skills is gone. My voice only opens up a few times a year and I use that time to record. My voice is rarely good enough to actually practice and move outside my comfort zone. And I can’t hold the flute anymore. While I try to do a bit of ear training here and there or listen to YouTube videos with music education, I forget everything again — nothing sticks with this crappy brain.

Isn’t it ironic? Chronic illness seemed to have shown me a way towards my place in the creative world, but it’s also what has made creativity so much harder. I hope one day for my body to be better and at a higher level of functioning so I can continue my creative journey. I fully believe this is possible.

Tell me…

How has chronic illness changed your approach to creativity?

How does chronic illness limit your creativity?

What are your hopes for the future?

I’d love to know your thoughts!

I wasn’t suicial, I just wanted peace

Did you miss?

I stay sane with these journaling techniques

Meditation: Preparing your body and mind to rest

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My new single is out! It’s called Where Cold Hearts Go To Pray and is about wanting to escape the emotional and physical pain of chronic illness

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp to support the cause.

I stay sane living with severe chronic illness using these journaling techniques

Madelleine Müller (she/her) — Wed, 16 Jul 2025 04:57:15 GMT

Photo by Prophsee Journals on Unsplash

I must admit, I’m not a big journaler. I can’t always hold a pencil/pen and often my brain is too exhausted for it. But I do use different journaling techniques when I’m beginning to feel that my mental health is slipping — which happens often, as living with chronic illness in an ableist society comes with its challenges.

I rarely do stream of consciousness writing as I find it turns into rumination with lots of ‘this sucks’, ‘I wish I had a bit more brain power’ and so forth, so I need to go a bit deeper, which can be exhausting, but necessary. Sometimes, I won’t use a journal or even write anything down — I’ll do one of these techniques mentally. I find it works just as fine.

Soothing my Inner child

I speak a lot to my inner child — either mentally or through a journal. She is incredibly frustrated that she can’t do all the things she loves. So I ask her about it. I get her to tell me what she would do if she were in a body that could do all those things. It can be hard, but good things come from it too.

Sometimes — only sometimes — I discover that there are versions of what she wants that I can do. I discovered that it was actually possible to record my album by letting go of the ‘right way’ to do it. My inner child dreamed of being in a studio, working with awesome musicians and doing the whole ‘one more time with feelings’ thing. I can’t do that, but with my brothers help I set up basic recording gear next to my bed and when my body allowed it I recorded a verse at a time. You can listen to my most recent singles here.

I also deal with a lot of shame and other difficult emotions by talking to and nurturing my inner child. I will often soothe her by stroking her arm and saying things she needs to hear.

When I was dealing with social services for my care hours, my inner child went bonkers. She was scared, felt shamed for not being listened to, and was angry at the loss of control over my own life. I had to do a lot of soothing parenting to calm her down.

Talking to other sub-personalities

We are complex beings, with complex psyches. Sub-personalities, with each of their archetypal energies, play a big part in that complex psyche. Sometimes they take over and get too loud.

I, for instance, have a big warrior sub-personality. It protects me and fights for me, which is great, but it can get too loud or waste a lot of energy. I often need to talk to my inner warrior, either mentally or through my journal, and remind her that I’m safe.

At some point, she got so loud that she prevented me from writing and sharing my work, because what if I got negative comments and that would hurt me and my body (which is true). My warrior is there for a reason and she does her best to protect me, but we had to talk about how to loosen the protective energies.

Chopping everything up

The only way I can get anything done is by chopping the act up into as tiny pieces as possible. I use my journal for this process.

When I became mostly bedbound and couldn’t sit at a piano anymore, I had to change the way I wrote songs, I used my journal to brainstorm every single component that goes into songwriting from finding a chord progression (even this can be chopped up into tiny acts) to writing the lyrics (this can be chopped up too) to finding and fine tuning the melody (this too can be chopped up).

I use this for writing my book too. I might journal how to break up a chapter, or how to break up the research into tiny chunks (it is unfortunately rare that I can do research even when chopped up).

Emotional mind maps

This is my favourite way to journal when I’m in emotional upheaval and need to get to the bottom of things.

Let’s say the biggest feeling I may be feeling is anger and so I write that in a circle in the middle of the page. I then add more circles with lines coming from the big circle.

In these circles I’ll write down all the reasons I’m angry. This could be: “I didn’t get the right number of care hours” and “the social worker was patronising” and so forth. Then I focus on one circle and draw more from that one.

So I might focus on “the social worker was patronising” and write more circles with “I felt shamed” or “I had to share intimate details”.

I continue this until I feel a sense of release. I might continue by focusing on “I had to share intimate details” and write a few other circles about how that made me feel, like “I felt violated” and then I might finish off that path writing “this is NOT OK, and you have every right to feel violated, she did not need those details.”

Permission slips

I’m a hard worker and very dedicated to my work, but my body and mind can’t always handle it. I therefore need to give myself permission slips to allow myself certain things like taking a rest, or not doing something perfectly. You can read more about how to give yourself permission slips here.

I have found that having a good relationship to yourself, being your own best friend, and being honest about your true feelings is immensely helpful when dealing with chronic illness. These journaling techniques help me through it all.

Tell me…

What are your favourite journaling techniques whether mentally or on paper?

Do you feel your different sub-personalities? Who are they?

How is your relationship like to your inner child? Do you stroke your arm too to soothe?

I’d love to know your thoughts!

I wasn’t suicial, I just wanted peace

Did you miss?

The power of self-witnessing in chronic illness

Anger can be vital in chronic illness life

Meditation: Instant relief reset

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My new single is out! It’s called Where Cold Hearts Go To Pray and is about wanting to escape the emotional and physical pain of chronic illness

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp to support the cause.

I wasn’t suicidal, I just wanted peace

Fri, 11 Jul 2025 07:03:24 GMT

I wrote this song for all my chronically ill and neurodivergent peers, all of us with bodies and minds that don’t fit in, who’ve had to figure out how to live in a world which is too loud, too aggressive, too broken and not suited to our needs. Chronic illness makes you a stranger to your own life, while the world keeps going on without you, like you were never really part of it. I wrote Where Cold Hearts Go to Pray as a resting place — a sacred world for those of us who’ve been left behind.

Purchase or stream here

Purchase or stream here

All income for the first year (possibly more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.

If you can’t listen to music, then here are the lyrics.

The song is from a memory I have when I was freediving while living in Tanzania. I was in the beginning stages of illness and my senses were overwhelming me. Everything was too bright, too loud, too smelly, too aggressive.

I took my usual deep breath and went under. I was in heaven: the vacuum-like silence, the water caressing my achy bones, the stillness of it all. And then I noticed it — a feeling that I didn’t want to come back for air, that I wanted to stay here and not feel anything but the stillness. It both scared me and awed me at the same time.

My body screamed: STOP! I was only three metres down, I have done at least twenty-five metres in one breath before, but I knew I wasn’t supposed to dive that day.

I’ve also realised later on that with all the inflammation happening in my body, I wasn’t able to hold my breath for very long. I remember feeling my lungs were tighter.

That transcendent stillness under the water is something I still long for. On days when I find it hard to live in my body I take myself back there, under the blue, and it relaxes me.

The verses came easily to me, and so did the piano introduction. I wish I had written down what inspired me or how I came up with the intro part, because I love it so much and want to know how I did it so I can do it again. I have no idea how I created the chord sequence, it just came through my fingers. I love the magic when this happens, but it also scares me because I feel I will never be able to do it again.

I was stuck on the lyrics for the chorus and I started looking at the books in the apartment I was living in. I found a bible and as I was flipping through it I saw the words cold and heart and so the hook for this song was born.

By cold hearts I don’t mean unfriendly or mean, but hearts that have become cold because of a lack of compassion shown to them. I felt like a ‘cold heart’, as many of my friends disappeared and many people around me didn’t understand my situation or my needs. My heart felt cold.

Jonas Müller (my brother) plays the piano. François Perdriau has mixed and Pete Maher has mastered the song. I feel so incredibly lucky to be able to have my song accompanied by such excellent musicians. They really brought out the vibe in the song.

All income for the first year (maybe more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.

Purchase or stream the music here.

Tell me…

What is a place you go to in your mind to find solace?

When can the world be too loud for you? Is it too broken?

What are your favourite lines from the song? Here are the lyrics

I’d love to know in the comments below.

My debut single is out! Salem: A song for the disbelieved

Did you miss?

When doctors turned their backs on us, I wrote this song

Meditation: Connecting to the Earth

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

I want you to know…

I’ll be sending out one more single and then my album drops on 29th August. I don’t know what my energy levels will be like during this period as I’ve never tried this before. I’m expecting lots of emotions during this release time and emotions can be taxing.

So please bear with me during this upcoming period. I will most likely veer off schedule and I cannot say how often I’ll be sending out essays or meditations.

Preparing your body and mind to rest [Meditation for chronic illness folks #21]

Tue, 08 Jul 2025 04:48:13 GMT

My new single, There Are No More Heroes, is out! You can listen to or buy the song here.

Hi friend!

Resting is boring, it’s hard, and it can be accompanied by feelings of guilt or ‘this isn’t right’. Because of this, I sometimes need to prepare my body and mind that it’s time for deep rest, and that it’s ok to rest completely. If I don’t do this small mindset shift, I may only find superficial rest as my mind is going haywire in the background.

So in today’s meditation we will prepare our body and mind to move into a deeper rest.

How did it go?

How did you find this meditation?

What came up for you?

Were you able to rest more deeply?

Let me know your thoughts in the comments below. It makes me so happy to hear from you.

Looking for all the meditations? Click here

Thank you so much for listening to this meditation. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

Listen to or purchase my new single, There Are No More Heroes

I wrote this song when I felt the world (and doctors) had given up on me.

When I wrote this song I was mainly housebound, I hadn’t met any doctors who would listen or understand, I had felt ostracised from my present (able-bodied) community, nobody outside fought for my patient group, we were neglected and forgotten. There are no more heroes, but we’ll do just fine on our own, I thought.

Nostalgia can be both painful and a balm when living with chronic illness

Madelleine Müller (she/her) — Wed, 02 Jul 2025 05:53:14 GMT

My debut album will drop on August 29! You can presave it here • I’ve created a playlist on Spotify of Disabled & Chronically Ill Artists. Listen and save it here • My new single is out! It’s called There Are No More Heroes and is a song about the world (and doctors) turning its back on us. Listen and read more here, or listen while you read:

Photo by Jon Tyson on Unsplash

I’m one of those lucky and privileged people who have had an idyllic childhood. I grew up in a commune where people were always around to help, we ate dinners together in a large hall, sang songs before each meal, played in the pillow room after school, and went on annual canoe trips. I was never alone.

When I was six years old we moved to Dar es Salaam, Tanzania. Maybe not so idyllic for my parents, who had to deal with constant electricity cuts, water shortages and corruption, but for me it was paradisiacal.

We lived in a gated Scandinavian community where we could roam free and play tennis or basketball or rollerskate in the large banda. I went to an international school with all the other wealthy kids and I loved the multi-cultural set-up (not so much the entitled kids) and how there was space and resources for our creative pursuits, and the beach was only five minutes from my home — a gated beach for all the rich kids who had money for boats (we bought a small Laser).

As a child I didn’t understand the massive amounts of privilege we had and I didn’t understand the racial or economic issues at stake (I was living in an African country and most of my friends at my elite school were caucasian or Asian, very few were African).

When I became ill with ME/CFS, lost my career, my income, my friends and got to meet the paternalistic and demeaning welfare system I viscerally understood the privilege we had (and still do) have. I also began to understand what it means not to have that privilege (I have too many friends without it) — and how quickly privilege can be taken from you.

I used to live in a bubble where life was kind and nothing bad happened — to me at least. I was invincible and all that bad stuff I saw out in the world would never happen to me.

I’m nostalgic, not just for my idyllic childhood, but for living in the bubble where nothing bad happens. And when lying in bed all day due to illness, that nostalgia sometimes becomes a life-line: At least I had a beautiful life.

Nostalgia is one of the things I seek to convey in my song There Are No More Heroes. You can read more about it here. I didn’t intend to write about nostalgia, but that’s what came out.

It is a double-edged sword in the sense that nostalgia is both pleasant and painful. In my song I speak of how “we would listen to the stars / they told us that we’d live forever / but that was a lie”, but I also speak of a happy childhood: “Remember how we’d be lost in play.” The bubble I was living in was a lie. Something bad did happen and it happened to a lot of us. There is both a pain and a soothing balm in that lie.

I skimmed through a study recently (I do not have the brain power to read it meticulously) that concluded nostalgia can relieve physical pain. I saw another study that suggests nostalgia has health benefits and can promote physical well-being. I wasn’t able to read the part about why this is the case, but I can guess:

Nostalgia can, in some cases, soothe the nervous system and we can ‘live in the past’ for a few moments at a time. We can, in our imagination, live in a better place (depending on our level of privilege).

But I imagine there comes a point when nostalgia becomes painful and addictive, like being stuck in the past. I sometimes find nostalgia painful in that I know what I’m missing out on right now, and I become sad at the thought that life could indeed be wonderful and colourful and lively as it has been before.

Tell me…

Are you nostalgic for the past?

What are you/are you not nostalgic for?

Do you find nostalgia painful or a soothing balm, or both?

I’d love to know your thoughts!

When doctors turned their backs on us, I wrote this song

Did you miss?

I’ve had to ditch these writing rules since becoming chronically ill

Facing relapse and the dread of emptinitis

Meditation: Instant relief reset

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My new single is out! It’s called There Are No More Heroes and is about the world (and doctors) turning its back on us

When I wrote this song, I was mainly housebound, I hadn’t met any doctors who would listen or understand, I had felt ostracised from my present (able-bodied) community, nobody outside fought for my patient group, we were neglected and forgotten. There are no more heroes, but we’ll do just fine on our own, I thought.

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp or iTunes to support the cause.

Letting the day (or night ) go [Meditation for chronic illness folks #20]

Wed, 25 Jun 2025 04:41:15 GMT

My new single, There Are No More Heroes, is out! You can listen to or buy the song here.

Hi friend!

As I cannot go for a run, do yoga, or ‘dance things out’, I often feel like I am holding on to stuff that I picked up throughout my day or night. This can be feelings, thoughts conversations, or just ‘energy’. When I feel like my nervous system is overloaded or just doesn’t feel right, I do this meditation to cleanse my energy field, so to speak. I feel like I come back to myself somehow — almost like a reset.

So in today’s meditation we will let go of anything we no longer need.

How did it go?

How did you find this meditation?

Was it easy to let go?

How did you feel afterwards?

Let me know your thoughts in the comments below. It makes me so happy to hear from you.

Looking for all the meditations? Click here

Listen to or purchase my new single, There Are No More Heroes

I wrote this song when I felt the world (and doctors) had given up on me.

Why chronic illness pacing is political

Madelleine Müller (she/her) — Wed, 18 Jun 2025 10:22:32 GMT

Photo by Daria Litvinova on Unsplash

For years, I felt guilty every time I had to rest. Society taught me that slowing down meant failure, but chronic illness demanded it. The more I learnt to pace, the more I realized that rest and pacing are linked to political, economic and cultural systems.

I realised how my privilege as someone with resources and able-bodied parents who can provide me quality care allowed me to pace diligently. It allowed me to stabilise my body over time.

I have friends who are in constant fights with social services (I’ve been there too), who cannot get the right number of care hours or the right kind of care that is suited to their bodies and minds. It is impossible for them to pace diligently and they are constantly forced to over-exert themselves, making them sicker or preventing them from at least stabilising or managing their illness.

It took me many years to truly learn pacing. At first I thought it was about doing as much as you can and then resting when the body was over-exerted and couldn’t do anything else.

But pacing is a radical self-care act that means resting before the body collapses — a long time before. I don’t know about other illnesses, but for ME/CFS, experts often point to the 70% rule: Do 70% of what you can handle. It means doing a bit less than your max capacity.

This is downright contrary to the whole “you can rest when you die” trope in our culture. It feels unnatural to do less than what your body and mind can handle.

In western capitalist society, we value people based on their ability to produce. Our cultural values see hard work as a virtue and rest as laziness. Resting, pacing and slowing down defy these cultural expectations.

But pacing is hard work! Resting is the hardest thing I have ever had to do. The human psyche is not lazy, we want to do stuff. We want to work and contribute. Resting (this much) feels unnatural.

Pacing is labour, but a kind of labour that is devalued, frowned upon even, because it doesn’t generate economic profit. It’s invisible, yet life-sustaining work.

Article 24 of the Universal Declaration of Human Rights states that every human being has the right to rest and leisure. Yet many people living with chronic illness are not awarded this right when they don’t get adequate and quality care hours.

Within our own community we often see sick people blaming other sick people for not pacing well-enough when their symptoms or function worsen. This is not OK.

First of all, pacing is not a cure, it’s a tool in the management toolbox — and symptoms can flare even with diligent pacing. Second of all, pacing is not something everyone can do radically. People need to eat, they need to live in clean quarters, they need to shit and pee. If adequate care is not available, chronically ill people have to use their remaining resources for survival. Pacing is often a privilege. And that’s why it’s political.

Tell me…

Are you able to pace diligently right now?

What does pacing mean to you?

What do you need in order to pace diligently?

I’d love to know your thoughts!

When doctors turned their backs on us, I wrote this song

Did you miss?

There’s another kind of loneliness we rarely talk about

Chronic illness burnout is real and we need more research

Meditation: Detaching from our thoughts

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My new single is out! It’s called There Are No More Heroes and is about the world (and doctors) turning its back on us

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp or iTunes to support the cause.

When doctors turned their backs on us, I wrote this song

Fri, 13 Jun 2025 06:09:10 GMT

I wrote this song during a time when I felt the world had given up on us.

I remember watching Luke Cage and a young boy from the street said something about there not being any heroes, and I said to myself “damn right, we’re on our own!”

At that time I was mainly housebound, I hadn’t met any doctors who would listen or understand, I had felt ostracised from my present (able-bodied) community, nobody outside fought for my patient group, we were neglected and forgotten. There are no more heroes, but we’ll do just fine on our own, I thought.

Purchase or stream here

All proceeds for the first year (possibly more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.

If you can’t listen to music, then here are the lyrics.

I wrote this song when I was living with my parents in southern France. I was just starting to understand (after five years of being ill), that there was something seriously wrong in my body and that it might be ME/CFS.

I knew very little about the disease and I hadn’t yet met my community of other ME patients, although I was beginning to be aware that there were millions like me out there.

No one in Denmark was talking about this illness and I felt like I lived in a parallel world: How could no one be fighting for us when it is something that has destroyed so many lives.

I have often felt like this song was a bit prophetic, too. In 2019, a unanimous Danish parliament voted to change the perception of ME from a psychosomatic perception to a biomedical perception — the correct and scientific perception.

This brought several high-standing doctors into a frenzy. Without listening to the patients or reading in-depth, and critically, the scientific literature of ME, they opposed the decision openly — and angrily — in the Danish media. They thought it was dangerous for politicians to meddle in health matters and that making a psychosomatic illness biological was an abomination.

The Director of the Danish Health Authority spoke at a conference for doctors and said about the vote (my translation): “That day is not a star moment for me. The Danish Health Authority had very strongly indicated - almost with an exclamation point - that we were very concerned about something that was not somatic [ie not biological], and that it would do more harm than good.”

There are no more heroes. Do you see? Those in our society who are supposed to be on the side of patients, who are supposed to be our healers, turned against us, with massive consequences for our lived realities.

The song is also about nostalgia — a yearning for the happiness of a former place or time. It expresses a yearning for play and innocence:

Upstairs in

The attic, I found our old cartoons and masks

Remember

How we’d be lost in play

And for a time when we thought we could change the world:

We dreamt of saving the Earth

But the moon was too high

And a time when I felt the world was safe and we were indestructible:

Remember

How we would listen to the stars

They told us we’d live forever

But that was a lie

There Are No More Heroes is a song of nostalgia and grief, yes, but it is just as much a song of hope, a hope that we will all “sit under blue skies” and “meet again some sunny day.” I have met so many beautiful souls whose lives have been destroyed by illness. One day, I hope to meet you all in real life!

I play the flute, Jonas Müller (my brother) plays the piano and Matthew Adomeit plays the double bass. François Perdriau has mixed the song and Pete Maher mastered the song. I feel so incredibly lucky to be able to have my song accompanied by such excellent musicians. They really brought out the vibe in the song.

All income for the first two years (maybe more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.

Purchase or stream the music here

Tell me…

What are you nostalgic for? Whether you live with chronic illness/disability or not I’d love to hear from you.

Do you wish there were more heroes? What would they do?

What are your favourite lines from the song? Here are the lyrics

I’d love to know in the comments below.

My debut single is out! Salem: A song for the disbelieved

Did you miss?

Creating with a disabled body in a perfectionist world

Meditation: Letting go of what we can’t control

Are you looking for all the meditations? Click here

I want you to know…

I’ll be sending out two more singles roughly a month apart and then my album will drop on the 29th of August. I don’t know what my energy levels will be like during this period as I’ve never tried this before. I’m expecting lots of emotions during this release time and emotions can be taxing.

So please bear with me during this upcoming period. I will most likely veer off schedule and I cannot say how often I’ll be sending out essays or meditations.

Creating with a disabled body in a perfectionist world

Madelleine Müller (she/her) — Mon, 09 Jun 2025 06:20:11 GMT

My new single is out! It’s called Salem and is a song for those of us who’ve been disbelieved, disrespected and mistreated for being sick. Listen and read more here • On Friday the 13th my next single will drop. It’s called There Are No More Heroes and is a song about the world giving up on us (but it’s also full of hope).

Photo by Alexas_Fotos on Unsplash

When I released my debut single, Salem, I was flooded with positive comments about the song. People thought it was beautiful, raw, haunting, vulnerable and so forth. I loved hearing and reading all these wonderful comments. Salem was even picked up by a radio station in Munich who loved the song so much they chose to play it. I was basking in confidence and I felt like those days where I didn’t feel good enough, or didn’t feel like I had the right to play music, because I couldn’t practice everyday (well… not at all actually), were over.

But then someone from my own patient community criticised my flute on the song and said I should either fix it or leave it out entirely. Yikes! If I was secure in my flute playing, this would not have affected me much, but I’m not and her comment completely floored me — all the other hundreds of positive comments were negated in an instance.

I went right back into that space where I wasn’t good enough, where I wasn’t a real musician because I can’t practice or even just play a whole song at a time, where I believe that I shouldn’t be making music because I can’t do it perfectly.

It took away my sleep and sanity for a bit. I stayed up all night watching YouTube videos about how to handle criticism (the main takeaway was to ignore it), but none of it was helping.

I kept thinking to myself: But I am not good enough! I couldn’t practice, I couldn’t play the flute piece several times and once more with feeling, and get critiqued and play it again. I could play it once, with a flute that wasn’t warmed up, lying in bed, my arms propped up by yoga blocks, unable to move around and be flexible with my embouchure and posture. Of course it’s never going to be a perfect flute.

And then it hit me: I’m being judged as if I were an able-bodied person, through the lens of a perfectionistic world, which centres technical precision over expression or authenticity. We live in a world of auto-tuners and filters and whatnot that gives the illusion of perfection.

I asked my friend what she thought of the flute and she said: “What a beautiful song. Tears cascaded down my cheeks. It’s so raw. And the flute is exactly as it should be.”

And I have always felt the same, the flute is raw, it’s vulnerable, it shakes, as it should do, because it’s a flute and the sound comes from my breath, which is raw and vulnerable and shaky and unstable as I live with chronic illness. I want people to hear that the music comes from a sick person, living in an imperfect body. It’s part of the story.

Able-bodied perfectionism demands consistency in practice, lots of energy, cognitive clarity, physical strength — we often speak of music or arts in general as being an athletic feat.

For a disabled musician like myself, this kind of perfectionism becomes a source of shame — not growth. I cannot do better. I cannot practice. I cannot record it one more time with feeling. I often feel like I am not allowed to play music because I can’t do it like able-bodied people can.

We have to adapt, and I don’t think our art suffers from that. In fact, I believe it enhances our art.

We play or write or draw or paint with limited energy, through brain fog, through physical pain. Every single note, or pencil stroke, or word carries with it an invisible labour that most people don’t see — a different kind of labour.

Our art might be quieter, or slower, or vulnerable, or imperfect, but it’s raw, vulnerable, and naked.

We often hear ‘write every day’ or ‘practice these scales everyday’ or ‘draw everyday’. This enforces the myth of the ‘ideal artist’, someone who hones their craft meticulously everyday, performs flawlessly, and always revolutionises art in some way — an ideal that a lot of disabled and chronically ill artists cannot live up to.

Why do we glorify hustle and not resilience? Or technical perfection and not vulnerability?

I’ve come to realise (and I’m still working on truly internalising this) that letting go of perfectionism doesn’t mean settling or being less than, it means expressing our truth in an authentic way. During the recording of my album I had to let go of a lot of perfectionism — if I didn’t, the album would not be a reality.

The world needs our voices, because we challenge norms and promote vulnerability, honesty and rawness over technical perfection. Could we speak of our art as being emotionally and phenomenologically perfect?

Tell me…

How do you deal with perfectionism?

How can we make more space for and honour disabled artists?

I’d love to know your thoughts!

My debut single is out! Salem: A song for the disbelieved

Did you miss?

I’m writing ‘chronic illness’ on my CV — we’re that awesome

Embracing Crip Time: Redefining pace, productivity and patience

Meditation: Moving deeper into acceptance

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My debut single is out! It’s called Salem and is for all of us who weren’t believed

Salem is a song for all those out there who have been disbelieved, disrespected and mistreated for being sick. It’s been called “Heartachingly beautiful, raw, and profound.” And another listener wrote: “Your song Salem cracked something open in me — something that’s been waiting, aching, unheard…. This is more than a song. It's a testimony. It's protest. It’s sacred remembrance.”

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp or iTunes to support the cause.

Listen here

Moving deeper into acceptance [Meditation for chronic illness folks #19]

Thu, 05 Jun 2025 04:12:29 GMT

My debut single, Salem, is out! You can listen to or buy the song here.

Hi friend!

Living with chronic illness or other difficult life circumstances means living with difficult emotions too. And as we live in the positive thinking era we may not allow ourselves to feel these difficult emotions. I’ve noticed that I have a tendency to shut down, not wanting to feel it all, but that also shuts down other emotions like joy and excitement. I’m a big proponent of feeling your feelings — I believe that when we can contain and sit with our own feelings, it’s easier to sit with other people’s feelings too and our empathy muscle expands. I also believe that when we feel our feelings, we move deeper into acceptance of the present moment, while still maintaining a sense of hope.

So in today’s meditation we will listen to our heart-space ask it what it truly feels today and what it needs from us.

How did it go?

How did you find this meditation?

What feelings came up for you?

How did you feel afterwards?

Let me know your thoughts in the comments below. It makes me so happy to hear from you.

Looking for all the meditations? Click here

Listen to or purchase my debut single, Salem

Salem is a song for all those out there who have been disbelieved, disrespected and mistreated for being sick.

Salem is a metaphor for how women’s bodies have been neglected by medical science, how patients — including men, transmen and transwomen as well as non-binary people — suffering from diseases disproportionately affecting women, such as ME/CFS, Long Covid, fibromyalgia, MCAS, EDS, POTS, migraines, endometriosis, etc. were dismissed for being hysterical when in reality our bodies had become ill, and how people have died without recognition of the true cause.

I’m writing ‘chronic illness’ on my CV — we’re that awesome!

Madelleine Müller (she/her) — Wed, 28 May 2025 04:26:09 GMT

My new single is out! It’s called Salem and is a song for those of us who’ve been disbelieved, disrespected and mistreated for being sick. Listen and read more here.

Photo by Mark Hayward on Unsplash

I was daydreaming about getting so well so I could go back to work the other day. While I will most likely stay independent and do freelance work if I get well enough, I liked toying with the idea of how I would present myself to a new employer.

The job-experts tell you to not have any holes in your CV — i.e. long periods where you haven’t worked. But in my daydream, I found myself talking about how robust and awesome my skill set is because of having lived with chronic illness for so long.

Here are some of the skills that can make us awesome:

We have learnt acceptance and tolerance

I don’t think many people without chronic illness can truly imagine the kind of life we live. They may have had the flu or something else passing, but living with pain and low-energy levels on a daily basis is far from imaginable. We’ve been forced to build at least some acceptance and tolerance for the situation we’re in. We can handle more pain and discomfort than others, we can live with few means and few resources. This acceptance is highly valuable in the world, where things don’t always go as planned and where situations and circumstances aren’t always perfect.

We can handle the dark stuff

Many of us have faced our own mortality to a much larger degree than able-bodied people have had to. We’ve seen what happens when society mistreats us or neglects us and we know how stigma affects our mental and physical health. We see the dire consequences of certain political and economic actions (like welfare cuts) more clearly than able-bodied people as we ourselves have faced these consequences. Our analysis of the world and situations within it can be more complex and deep.

We have strengthened our empathy and listening muscles

We know how it feels not to be faced with empathy and compassion — and we therefore know how important it is to people’s mental health and well-being. Empathy is not just ‘being nice’, it means having the ability to vicariously feel the experience and feelings of others. While we may not vicariously be able to feel every human being’s experience, we know how to listen, and because we ourselves have often not been heard and our word trusted, we have a deep respect for the lived experience of others and we know how to trust their word.

When I was working in the non-profit world, in a global child rights organisation, this skill was vital in order to analyse the situation we were trying to resolve. While I do believe I have always been a good listener, chronic illness has immensely improved this skill.

We are highly efficient, responsible, organised and our time/energy management is impeccable

We’ve had to be our own doctors, organise our own care and medication, create routines and systems that allow us to save energy and pace even more diligently than elite cyclists do. We can do a lot in a tiny amount of time and we have learnt to break down tasks into manageable chunks.

Imagine us out in the world. Imagine us as leaders and co-workers. I honestly think we make the world a better place.

Tell me…

What else makes us awesome?

Which one skill have you had to improve because of chronic illness?

What could abled people learn from us?

I’d love to know your thoughts!

My debut single is out! Salem: A song for the disbelieved

Did you miss?

There’s another kind of loneliness we rarely talk about

Anger can be vital in chronic illness life

Meditation: 360˚ Breathing for relaxation

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My debut single is out! It’s called Salem and is for all of us who weren’t believed

Listen here

360˚ breathing for relaxation [Meditation for chronic illness folks #18]

Madelleine Müller (she/her) — Wed, 21 May 2025 04:26:21 GMT

My debut single, Salem, is out! You can listen to or buy the song here.

Hi friend!

I always have this breathing exercise in my relaxation toolbox. It helps me to instantly relax both my upper body as well as my thoughts. As a singer, I learned this kind of breathing in order to have more support for my voice when singing. It’s especially helpful for those of us curled up in bed or the couch all day, as it helps expand and relax those breathing muscles.

So in today’s meditation we will do a breathing exercise that helps you to relax the upper body by expanding it first. Please be careful not to over-breathe. You can do this by making sure you exhale a bit more than you inhale and by following your body and not forcing the breath into it. Over-breathing can exacerbate neuropathic pain, and we don’t want that.

How did it go?

How did you find this breathing exercise?

Was it easy to do?

How did you feel afterwards?

Let me know your thoughts in the comments below. It makes me so happy to hear from you.

Looking for all the meditations? Click here

Listen to or purchase my debut single, Salem

Salem is a song for all those out there who have been disbelieved, disrespected and mistreated for being sick.

There is another kind of loneliness we rarely talk about

Madelleine Müller (she/her) — Thu, 15 May 2025 04:58:21 GMT

My new single is out! It’s called Salem and is a song for those of us who’ve been disbelieved, disrespected and mistreated for being sick. Listen and read more here.

Photo by Kristina Tripkovic on Unsplash

I have always felt a sense of loneliness and a difficulty connecting with people at surface level. I, later in life, discovered that as an INFJ personality type this was pretty standard. I could connect with a few people deeply, but I never had a lot of friends. Also, my friends were often long-distance as I have lived in different places — my weekends were often spent alone.

When I became ill with ME/CFS I discovered a different kind of loneliness. Yes, friends left me — but they weren’t my true friends to begin with. I have a small handful of close friends now who I talk or chat to on a regular basis.

If you asked me right now if I felt lonely I would say ‘ mmmm no, I don’t think so’, because in the traditional sense I don’t. I have friends with whom I connect, I’m taken care of and have wonderful company by my parents.

But I have a nagging sense that there is loneliness within me at some level — a kind of loneliness I haven’t been able to explain, until now.

The other day I was reading one of my favourite singer songwriters Emily Barker’s blog post. It was about loneliness and she introduced me to a new book by Noreena Hertz called The Lonely Century: A Call to Reconnect.

I have about two to five minutes in the evenings before I go to bed where I can read something new and I started the book.

Hertz writes:

“A key difference between my definition of loneliness (the one that will be used throughout this book) and the traditional one is that I define loneliness not only as feeling bereft of love, company or intimacy. Nor is it just about feeling ignored, unseen or uncared for by those with whom we interact on a regular basis: our partner, family, friends and neighbours. It’s also about feeling unsupported and uncared for by our fellow citizens, our employers, our community, our government. It’s about feeling disconnected not only from those we are meant to feel intimate with, but also from ourselves. It’s about not only lacking support in a social or familial context, but feeling politically and economically excluded as well.”

There it was! She had put words to something I have felt ever since I became ill. The feeling of being unsupported and uncared for by my fellow citizens, community and my government. That creates a sense of loneliness.

I have friends, yes, but my patient group (and other patient groups especially with illnesses disproportionately affecting women) has been gravely ignored, neglected and downright stigmatised for decades.

As a person with disability I do not get the care and support I’m entitled to from my government — austerity measures and new public management has eroded our welfare states.

All this social exclusion creates feelings of disconnection, powerlessness and, eventually, loneliness.

It’s interesting, because I was about to write my PhD on social exclusion many years ago before I became ill — I hadn’t realised how it viscerally felt.

Hertz continues to write:

“It [loneliness] also incorporates how disconnected we feel from politicians and politics, how cut off we feel from our work and our workplace, how excluded many of us feel from society’s gains, and how powerless, invisible and voiceless so many of us believe ourselves to be. It’s a loneliness that includes but is also greater than our desire to feel close to others because it is also a manifestation of our need to be heard, to be seen, to be cared for, to have agency, to be treated fairly, kindly and with respect.”

How many chronically ill and disabled people feel heard and seen — especially by those in power? How many of us feel we have true agency in a world that isn’t suited to our needs? I don’t think it’s the majority.

I then realised that this is the exact kind of loneliness I seek to convey in my new song, Salem. The kind of loneliness that stems from social injustices done against you, not being believed, being ostracised and stigmatised, being blamed, and being mistreated by those who were supposed to help you. I realised I’ve lived with this loneliness ever since I wrote the song more than ten years ago! The song speaks of the powerless (they burnt my wings today) that we so often feel. You can listen to and read more about Salem here.

Hertz mentions a 2019 UK study of nearly a thousand participants which concludes that experiences of racial, ethnic or xenophobic discrimination increases the likelihood of loneliness by 21%. I am certain that ableist discrimination evokes the same experience.

We also know that loneliness is dangerous for our health (both physical and mental). On top of our chronic conditions we are forced to live with loneliness which has a negative impact on our health.

When will those in power ever learn?

Tell me…

Do you feel lonely? If so, in which way and what causes it do you think?

Do you ever feel the kind of loneliness described here?

What can we do to move out of this loneliness?

I’d love to know your thoughts!

My debut single is out! Salem: A song for the disbelieved

Did you miss?

We aren’t invisible! We are made invisible.

Our tiny power as disabled people and why it matters more than ever

Meditation: Overcoming restlessness

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

My debut single is out! It’s called Salem and is for all of us who’ve been disbelieved

Listen here

My debut single is out! Salem: A song for the disbelieved

Madelleine Müller (she/her) — Mon, 12 May 2025 05:20:21 GMT

My debut single is out! Holy moly, I never thought I’d get here when I started writing these songs ten years ago. I wanted to make this single my contribution to International ME day, which is today.

Salem is a metaphor for how women’s bodies have been neglected by medical science, how patients — including men, transmen and transwomen as well as non-binary people — suffering from diseases disproportionately affecting women were dismissed for being hysterical when in reality our bodies had become ill, and how patients have died without recognition of the true cause.

Buy/Listen here

If you can’t listen to music, then here are the lyrics.

I wrote this song before I read the statistics and facts about how illnesses disproportionately affecting women such as ME/CFS, Long Covid, fibromyalgia, MCAS, EDS, POTS, migraines, endometriosis, etc., have been neglected and downright dismissed, creating a devastating stigma.

But I had an intuitive inkling that what I was experiencing as a person living with ME/CFS was sexist. How the doctors always said I was perfectly healthy, or ‘just stressed’, or had anxiety when I could barely walk. Or asked me about my mood, gave me depression and anxiety tests, asked about my relationship to my parents, my brother, how I experienced my periods — never asking me about my body. Also, no one knew what was going on.

It all felt sexist.

I had also learnt that people living with ME were being sectioned into psychiatric care, because doctors thought they were delusional, and gave parents (often mothers) a Münchhausen by proxy diagnosis without ever talking to them.

Some people had also died of ME without recognition of the true cause.

We were blamed (and still are) for being overly emotional, for being hysterical, for being science-deniers, for not being able to handle modern life.

It felt like persecution and a complete misunderstanding of who we were and what was happening in our bodies. Everything seemed to be twisted.

I later learnt that my intuitive inkling about sexism was correct.

Since the 1970s, feminist literature has pointed out three problems in health:

How structural sexism creates inequality in the way research funds are prioritised.
That it is most often the white male body and psyche that research takes as its starting point and defines as the norm.
And that women's illnesses are disproportionately, and often incorrectly, attributed to social or psychological causes.

These three problems have been decisive for the historical stigmatization of ME/CFS patients, as well as other patients living with illnesses that primarily affect women (like Long Covid, fibromyalgia, migraines, endometriosis, and so forth).

For decades, psychological and behavioural research has been prioritised over biological research when it comes to ME (this is the case for other illnesses that primarily affect women, too). We are therefore left without proper treatment.

I felt, in an artistic way, that the misogynistic witch trials in Salem were the root cause of the neglect and disbelief we’ve suffered.

Salem was born in the middle of the night when I couldn’t sleep. I was angry at being dismissed and gaslighted by doctors and I started seeing women being burnt at the stake inside my mind. I felt a kinship to all those women who were misunderstood and blamed for being female and the words “I still carry their sins” popped into my mind.

Later, the following day, the words “no ashes to ashes or dust to dust” came to me. It spoke of how we were outsiders and weren’t recognised, even in death.

I started researching how women were treated during the Salem witch trials and eventually I had enough notes to start writing the song.

It was an easy song to write. It’s one of those songs that felt like I was born with it inside me, although I know it was created from hard work and a close collaboration with my subconscious.

I play the flute, Jonas Müller (my brother) plays the piano and David Hagen plays the double bass. It is mixed by François Perdriau, and mastered by Pete Maher. I feel so incredibly lucky to be able to have my song accompanied by such excellent musicians. They really brought out the vibe in the song.

All income for the first year (possibly more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes. You can also help the cause by sharing this wide and far.

Purchase or stream the music here.

Tell me…

What feelings are evoked for you when you hear the song (if you’re able to listen to music. If not, here are the lyrics? Whether you live with chronic illness or not I’d love to hear from you.

Have you experienced sexism — or the consequence of structural sexism — in the medical or other setting?

What are your favourite lines from the song?

I’d love to know in the comments below.

Did you miss?

My energy-compassion scale: Deciding when and how to create

This is what happened when I tried to embrace my disability

Meditation: A self-compassion pause

Are you looking for all the meditations? Click here

I want you to know…

I’ll be sending out three more singles roughly a month apart and then my album. I don’t know what my energy levels will be like during this periods as I’ve never tried this before. I’m expecting lots of emotions during this release time and emotions can be taxing.

So please bear with me during this upcoming period. I will most likely veer off schedule and I cannot say how often I’ll be sending out essays or meditations.

Overcoming restlessness [Meditation for chronic illness folks #17]

Madelleine Müller (she/her) — Mon, 05 May 2025 04:24:16 GMT

Hi friend!

First of all have you checked out the sneak peek of my new debut single, Salem? You can pre-save it on Spotify, Apple Music and iTunes (it will be out on all other platforms once released). Pre-saving helps me tell the algorithm that my music is worthwhile to place in playlists.

Pre-save Salem

And now to today’s meditation. Restlessness is something I deal with every single day. It is not natural to lie in bed most of the day and not do anything purposeful. I get these pangs of restlessness where I want to leave my body and leave my life (not in a suicide way, but because I’m so existentially bored and want to experience stuff). When it gets really bad I do this meditation and while it doesn’t remove the restlessness completely, it helps me get back to my body so I can sit with the boredom and contain it at least.

So in today’s meditation we will pull our energy back into our bodies, ground ourselves in order to, at least somewhat, overcome some restlessness.

How did it go?

How did you find this meditation?

Was it easy to pull your energy back?

How did you feel afterwards?

Let me know your thoughts in the comments below. It makes me so happy to hear from you.

Looking for all the meditations? Click here