Christina Applegate has recently published her memoir “You With the Sad Eyes” where she discusses her life and her experiences of developing Multiple Sclerosis (MS).
As a disabled woman, I wanted to read her words around her life and her experience of developing disabilities and I wanted to love her book.
And, mostly, I did.
She has done something profoundly honest.
She hasn’t sugar-coated her life or disabled experience.
She has been willing to be very vulnerable about both.
She chose not to “sprinkle sugar on shit”.
As a result, writing this post has been an intense and sometimes uncomfortable process.
I want to start by saying, as emphatically as I can, that I love and admire Christina Applegate.
I respect her deeply.
I am not writing this to question her character, her illness, her trauma or the way she is trying to live a disabled life that is new to her.
I am not interested in tearing another disabled woman down.
What I do want to write about is what happened in my body and brain while I read her memoir, and why, at sixty-three percent of the way through, I had to stop reading for a week before picking the book back up again.
Where I am reading from:
Christina and I share something in common.
Like Christina, before I was disabled, I was very active and loved above all else, to dance.
Intensely so.
I moved through the world, and understood it, through my body and movement.
I studied ballet for twenty years, and was happier en pointe rather than on flat feet on the ground. Dancing meant everything to me. I processed my emotions through movement to the music. I got lost in classical music and felt a freedom dancing I’ve never experienced anywhere else, doing anything else. I took ballet classes several times a week, starting classes at the age of four years old.
Dancing was like breathing to me.
I was also a rock climber and scuba diver. I loved swimming and being in the ocean and water in general. The freedom and strength I experienced in my body was profound and marked my relationship with the world.
That changed.
I have now lived a disabled life for a long time. It’s difficult to articulate the internal journey of my life as I’m aware of the very fine line of being seen as pitiable, or inspirational. It’s also hard to clearly express the very real and profound grief journey that I’ve been on around the physical losses I’ve incurred and the impact they’ve had on my life choices and relationships. I don’t see myself in any kind of inspirational way. I also don’t perceive myself as pitiable in any way either.
This is simply… my life. My utterly normal life. That I was born into.
I don’t have the option of another type of life. This is very much it. I don’t see my life as marked by tragedy or pain. It’s simply the life I’m in.
So, like Christina, I lived one way and then things happened and now I live another way.
Like Christina, I have experienced both perspectives. A very active non-disabled first half and a disabled second half.
I don’t wake up and battle with reality. I don’t know why that is. Maybe it’s because my illnesses in and of themselves are not terminal. Maybe because I’ve lived with disabilities long enough that I’ve moved through the feelings of devastation and am very much now solely concerned with living each day as purposefully as I can.
Losing my health and losing my mum and best friend to terminal illnesses very much woke me up to how we are all living on borrowed time. We get the life we get and we live the life we’re given. I know it sounds bleak and I know it sounds dismissive, but it’s honestly how I’ve always seen things for as long as I can remember.
So I came to Christina’s memoir as:
someone who remembers being able-bodied
someone who has lived in a disabled body for a long time
someone who understands how traumatising that transition can be
someone who doesn’t think of disability as a second, lesser life. There isn’t a “real me” before disability and a “ruined” version after. There’s just… my life
I was ready for Christina Applegate’s memoir to be raw. I was not prepared for how much it would frustrate me.
What I recognised in her memoir:
There is a lot in the book that I recognise and feel alongside her. I recognise the grief for the old body. I recognise the frustration of needing help with things you once did without thinking. I recognise the logistics, the endless admin of being ill. The pain and exhaustion.
So when people say the memoir is raw and vulnerable and funny, I do not disagree. They are right. She is saying things that many people with chronic illness and disability will recognise. That honesty matters. But that is only half of what happened for me as I read.
Where it tipped into “chuck the book at the wall” territory:
About sixty percent of the way in, I developed an actual headache. I found myself in what I can only describe as “chuck the book at the wall territory”. I put it down and realised I could not pick it back up again that night. I wasn’t able to pick it up and finish it for a further week.
I had to take a breather.
For me, the painful part was not that the book contains Christina’s devastation. Of course it does. MS has done brutal things to her life and body. It would be dishonest to pretend otherwise.
The painful part was the way disability and illness are mostly framed through devastation and loss, with very little sense that disabled lives can be full, ordinary, beautiful lives in their own right.
Reading it from this side of disability, the tone began to feel as if people like me are living lives that are so awful as to be almost unliveable. That there was a “real” life, and then this ruined version that barely counts. And I simply do not see disabled lives that way at all.
Yes, there is devastation. Yes, there is grief and rage and loss specific to the challenges of chronic pain and the changes that come with disability. I won’t in any way diminish, dismiss or invalidate any of those true lived experiences.
There is also:
normal everyday living
routine
laughter
relationships
ridiculous TV
sex and desire
boredom
cups of tea
ponds and frogspawn
friendships
intimacy
emotional growth
a deeper understanding of difference
unpicking our own ableism
travel
fun
pets
being a full whole human being
The wholeness of that reality feels absent from Christina’s memoir.
The humour is there, but it mostly sits inside devastation, not alongside a disabled life that is still a life. After a while, my body and heart could not take any more of that framing. I had to stop reading.
Because. for me. the absence of those very important aspects of a disabled life frame disability in a way that I feel is ableist.
“This is my therapist now”
In interviews around the book, Christina has talked about writing it as a way to excavate her trauma. She has said, in various ways, that the book is a place where she can say the things she might say to a therapist.
I understand that instinct completely. When something enormous has happened to you, a page can feel like the only place safe enough to fully hold all of it. I have done my own version of that in my writing. I’ve excavated my journey in my journals to such a degree I have instructed friends that if anything were to happen to me they have to go in and burn those bad boys before anyone who wouldn’t understand them can read them.
The difficulty is that a therapist’s office is private. A book is not. A therapist’s job is to hold your raw, unprocessed grief without judging you, and to keep it from spilling harmfully into the wider world. A publisher’s job, bluntly, is to sell as many copies as possible.
Christina is, as I perceive it, quite understandably, in the early, brutal stages of disabled grief. She has not had the fullness of time to metabolise this into a fully settled sense of “this is my life now”. She may never want to reach that place. She doesn’t have to. It’s her life and she gets to decide for herself how she wants to navigate and frame her lived experience of her disability and life changes. No one should suggest otherwise.
I am not suggesting otherwise.
The memoir reflects where she is. And where she was when she wrote the book is at a point where she needed to excavate her pain and howl and scream.
A completely legitimate response.
That is not any kind of moral failing. It is a very necessary part of the process of dealing with such immense change to her life and bodily experience.
The problem is what happens when a “mid-process howl” is treated, in public, as if it is the whole, healed truth of what disabled life is.
The view from long-term disabled life
I do not have MS, so I am not speaking for anyone who does. My illnesses are different. The specifics of her pain are not mine to comment on. What I can speak from is over 20 years of being diagnosed and classified as disabled.
For me, there is a point where your body’s limitations stop being an endless shock and start simply being the shape of your days. Where aids and adaptations stop feeling like intrusions and just become “the things I use” and “the needs I have”. Where you no longer spend time comparing your life now to your life before being disabled, because you are too busy living fully in your experience now .
It is not necessarily tidy. There are flares, crashes, appointments, humiliations, losses. Alongside the realities of living with chronic pain. But who honestly lives a tidy life? I don’t know anyone, able-bodied or not, that lives a life that isn’t messy and complicated.
It is the systems we have to live within as disabled people that bring the difficulties and disable us. Systems that deny us adequate financial support and adequate person-centred health care. Most disabled people deal with medical gaslighting, very real financial hardship, if not outright poverty. Damaged living standards, damaged prospects. Job losses, marriage breakdowns, all on top of being disabled.
From here, reading Christina Applegate’s narrative around disability, that is almost entirely framed within devastation, anger, disgust and loss, is like being told, over and over, that the only honest way to live in a body like mine is to hate it. That if I am not permanently destroyed or repulsed by my illnesses, I must be in denial or somehow sugar-coating my life.
Because this is where she is now in her disabled experience.
Very much grieving and very much angry about what has been taken from her by the illness she’s living with.
But I want to say, because it matters and needs to be said, she is living her experience of disability from such a financially privileged position. Able to afford support. Able to afford the best medical care. Able to pay for help, a special diet, medications, to be surrounded by people who want to acknowledge and hear her experiences as a newly disabled woman with a book deal to tell her story of it.
Most disabled people are disappeared due to lack of the resources they need to be visible.
Also, a lot of what is jarring for me in this memoir, is the ableism around work and a person’s worth hidden in the grief. If you’ve built your identity around being productive, useful and constantly in motion, disability won’t just feel like loss. It will feel like your value has been taken too.
I experienced this grief stage in my experience with disability. It is a profound agonising experience to grieve ones physicality.
That is where my frustration comes from. Not at Christina at all, she is doing what I did earlier in my disabled life. Grieving her losses and raging about them.
It is a vital part of the journey with disabilities.
I am frustrated with the idea that Christina’s memoir unwittingly supports, that devastation is the only way to view disability.
And I am frustrated with the lack of acknowledgement that there is huge privilege around her experience of disability.
I don’t believe that is Christina’s fault.
When a widely read memoir like this is received by huge numbers of able-bodied readers, who are inevitably reading her story through their own frameworks, the ableist trope of “poor her, that’s devastating, but isn’t she inspirational” gets quietly but powerfully reinforced across society.
The cultural problem: who gets the megaphone
If this memoir were a private journal, none of this would be my business. She would be free to pour out every bit of horror and grief without anyone thinking it meant anything about others who are disabled.
But it is not a private journal. It is a major celebrity memoir with huge reach and glowing reviews. The language around it is full of words like “raw”, “honest”.
Non-disabled readers are being told: here is a real story of what disabled life is like. With the unspoken inference being “of somebody who was once blonde, skinny and beautiful but who has changed. Someone who had everything but now… (insert head tilt)... is disabled.”
As if it’s the most awful tragedy anyone could ever journey through.
I’m not denying the losses and the grief as not being significant, traumatising and real. But disabled lives are not so diabolically terrible as to be unliveable, as they are so often framed.
And devastation is not the only framework for disability to be placed within.
Disabled lives are lives.
Containing all of the aspects of non-disabled lives.
And while non-disabled readers are reading Christina Applegate’s memoir and feeling the tragedy of her situation, as if that’s all there is to see and feel, there are disabled readers like me, and like some of the people who have replied to my Notes, who are quietly stepping away or feeling unsettled because the tone is rooted in expressing anger and pain at what is seen as catastrophe.
Disabled lives are not catastrophes.
Catastrophe and loss can be part of how a disability happens (or not) but disabled lives are so much more than pitiful tragedy.
What I’m seeing:
Christina is telling her truth, from where she is.
The industry seems to be treating that stage of grief as if it is the definitive map of disability. At least no one in the publishing sphere that put this memoir out into the world and publicised it is framing it otherwise.
And the rest of us are left to live life inside the wider assumptions that doing that creates within society as a whole, when able bodied people read of this experience of disability and view it through the ableist lense of “disability is tragedy and not much else”.
Responsibility without blame
I believe Christina wrote honestly from a place of grief and deep loss. Her need to process the huge change in circumstances of her life is valid and important.
I also think that when any of us publish work about disability to a huge audience, there is a responsibility that comes with it.
Not to be perfect. Not to be inspirational. But at least to be aware that our personal story will not be read in a vacuum.
And it leaves me wondering if anyone at all in the “chain of command” at Christina’s publishers has any lived experience at all with disability.
And whether anything I’m writing about here was discussed before publishing.
I understand and admire Christina’s wish to be honest.
This is not about demanding toxic positivity. I do not want a “brave little soldier” memoir. I am not asking her to pretend that the reality of her grief and loss do not exist or should be sanitised in any way. I hate that kind of flattening. It dishonours a person’s lived experience of their illness and disability.
What I long for, is a sense that disabled life can be many things at once. That devastation may be a very painful chapter, not the end of the book.
Why I am writing this at all
Reading Christina’s memoir was painful for me. Writing this essay has felt complicated. I know there will be people who read my perspective as jealousy, or cruelty, or a refusal to let a disabled woman be angry.
That is not what this is.
I am writing because, as I read the memoir, my disabled body started to become exhausted and hurt. Because my head ached from holding the difficult tension between recognising her pain and feeling somewhat erased and diminished by her framing. Because other disabled readers have quietly told me they felt something similar.
I am writing because I want us to have room for:
Christina’s devastation
the gentle normality of long-term disabled life
the experiences of people born disabled who never had a “before” to mourn, and don’t experience their disabled life as tragic in any way because it isn’t
all at once.
And I am writing because I do not want silence from people like me to be mistaken for agreement that this is all we are.
If you are disabled and considering reading it
If you are disabled and thinking about picking up the memoir, my only encouragement is to go gently. Some readers will find deep validation in her honesty. Some, like me, may find themselves in “chuck the book at the wall territory” by two thirds of the way through. Both reactions are valid.
You are not failing at solidarity if you have to put the book down. You are not lacking compassion if your body says “enough”. You are not ignoring ableism if you find nothing but solidarity in its pages.
I respect Christina for her willingness to be vulnerable, to face her trauma and to excavate her grief. I also want to say, her devastation is not the full story of disabled lives. It can be a chapter.
If you do read it, my suggestion is to view it as one woman’s very valid, very important mid-grief story, but not as the final word on what disabled lives are.
Because disabled lives, including Christina’s, including mine, including yours, are more than devastation. They are messy, complicated, painful, funny, ordinary, specific and beautiful. The same as any other person’s life.
We deserve stories that make room for grief, but I don’t feel we should stop there. We deserve stories that also incorporate all of the other equally valid aspects of disabled lives. And we deserve framing in our wider culture that understands that fully.
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