🙏🏻🍃❤️ Thank you Madelleine for the courage of truth-telling.
Although I am mostly house-bound, I actually went out for about an hour to a pub near our house with my partner; and I realised the ‘double-erasure’ of both becoming chronically ill - but also ageing. As women, we become so conditioned and a lot of our ‘identity’ defined by the male gaze.
And now, here I was, a middle-aged woman with her walking stick. So much radically altered by the invisibility of both my illness, my disablement and now by my ‘fading looks’… The anger that you spoke of last time - it can have a pure, revolutionary fire: ‘I may be changed by what happens in my life, but I refuse to be diminished by it’ - Maya Angelo. Stand/Lie Tall Women. We may be invisible but we are indivisible. ♥️
What took me by surprise (at the time) was how fast the disappearance and invisibility happened. One day I'm a regular person, with a job, a social life etc etc and then the next day, POOF. Disappeared. Invisible. Another layer of grief.
It's hard even when you KNOW. My lightbulb moment came sitting in a room full of chronic pain patient women. I was twisting in agony. They all looked so calm, content, pain-free...but I KNEW they were not. We were discussing horrors and torture.
And that's when I got it. That's what others see. Not the hours of pajama time, blackout curtains drawn, prostrate and miserable on my bed. Not the curled up couch drools. They just see me, my cute face, and maybe some stiff motions that barely scratch the surface of how much I hurt.
When I see my sweet friend who's sicker than I am, all I ever think is that she looks like SUCH A BABE. It's just impossible to grok what she's really going through.
But yes, our choices give us away. Our voices tell the story. The lack of access scoops us out of the public eye. We fight on so many fronts.
OMGosh, my invisible life! I felt this writing so hard. I am mostly homebound, myself. And spent years mostly in bed. When I was 24 I got mononucleosis and after it was "over" the exhaustion never got better. At 26, I would get a lot of cognitively crippling brain fog and was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. This was during grad school and I had to leave the Ph.D. program because of it as I could not physically keep up the requirements for full time matriculation. I graduated years later having taken that long to work on a masters thesis based on research I did while still active at the school in 2005.
I moved back to my home state with my fiance and got married. Doctors here did not believe in CFS, it was referred to as Yuppies Disease. Something that doctors thought "young, upwardly mobile people with nothing to complain about invented in their own minds." The fibro would give me nerve pain and I noticed what made it worse. Doctors didn't believe me. They saw I had a mood disorder diagnosis and attributed everything to that. One old doctor believed me, a neurologist, out of all the other docs in that insurance. I switched insurances after that.
I have basically been in and out (mostly in) of some kind of burnout for 26 years. The CFS and Fibro exacerbated a lot of my autistic sensory issues and adhd struggles. I didn't actually get a diagnosis for those, though, until 22 years later at the age of 47. I tried to get disability 14 years ago but the judge felt I was faking it. I cried after reading his personal letter to me. I had dreamed of being a scientist (among other things) since age 5 and having to walk away from a career in research due to my chronic health issues was devastating to my mood, my confidence and my self-identity. It took me years but I worked through all that and got to the other side.
Then perimenopause for a few years... did you know that autistic females experience that differently too? I had some expected symptoms (not expected by me as no one educated me or talked about it including my docs). I had a lot of unexpected symptoms and the "after hours" docs kept sending me to ER who had no idea what was causing the bizarre issues I was having. Then I learned about research going on in Europe and Canada on Autistic Perimenopause (of course not in the U.S.) and realized I wasn't crazy and I wasn't alone. I connected with others quickly after that.
Today I have a social time in person at my home, maybe once a week. I host a table top game night. My fellow gamers are also neurodivergent and queer and deal with disabilities. They are all able to hold down a job which is awesome for them. I wish I could. I am trying to get my arts business going so I can work as I am able to. Before that I volunteered with the League of Women Voters at the local level. And before that I ran a circus/flow arts festival.
I don't currently have any help with my pain or fatigue, mind fog, etc. I have been dealing with this on my own mostly for 26 years. I take tylenol and drink a lot of coffee. (I tried no caffeine for 2 years and I was a zombie. It didn't work for me.) My docs have been little help. The sad thing is I am on my husbands insurance through his job and it is good insurance as it goes here and I still haven't had any relief. I heard about some stuff in autistic spaces online recently for chronic pain that I will be checking out soon, though, with my doc.
I apologized for the novel. Just commiserating and hoping to make some kind of connection and find people who understand.
Thank you so much for sharing your experience. I had no clue that perimenopause showed up differently in autistic women. Thanks for educating us. What an ordeal with doctors and social service judges and what not — what gaslighting! And thinking you’re faking it! Aargh no one does that! It makes me so happy to hear about your social time, although I’m sure you just wish there was more of it too. Much love to you ❤️🌸
I read your story with interest, thank you for taking the time to write it.
So sorry to hear about your life long experience with such little and dismissive be support.
I’ve only recently heard of autistic perimenopause being very different - only because autistic women on here are writing about it. Let me know if you’d like links if you aren’t already connected.
I believe so much in the power of sharing our story so thank you for sharing yours.
I am really done with hearing how beautiful I look. What people mean as a compliment just comes across as dismissive and insensitive. You are absolutely right - my illness can be seen, in many ways. We are indeed made invisible. Thank you for this important piece.
Ah man. I heard it, too. And I am supposed to be happy about it, because it is a compliment? I mean, yes it is, but context matters. If you are getting ready for going out and you ask how do I look in that outfit sure. But when you share about your health struggles... Offf, it feels like a slap in the face. No. Just no.
Absolutely invisible auto-immune issues. In fact, I rarely even tell people about it because it’s so easy for them to forget or not believe me. Just more hassle. Sending hugs.
This is an incredible, and necessary, piece. I struggle so much with how my illnesses are seen as invisible, whilst having a deep embodied knowledge that my illness touches everything i do—that it is there. and yet, people can’t (or refuse to) see it. thank you for bringing this to attention. 💓
Thanks for providing all the insightful information alongside such shocking lived experience. I’m sorry people dismissed you to the extent and in the way they did.
Thanks for reframing in this way too “we aren’t invisible. We are made invisible”.
I’ve been reading Unwell Women and we set the medical system up this way - to gaslight, dismiss, make judgements and assumptions , all whilst ignoring the patients voice and needs.
I wrote a piece the other year titled Invisible Me detailing what I’d done to make myself seen:
Connecting to my own inner knowing
Rescuing myself
Identifying my needs and putting in place measures to meet them
Doing what I could when I could
Journalling the crap out of all my problems
Becoming my own best friend, advocate & cheerleader
Thankful everyday for the privilege and capacity I had available to do this 🙏
Madelleine, this resonates deeply. It’s not that chronic illness is invisible—it’s that too many people refuse to see it. The way illness is measured against outdated, narrow expectations of what a “real patient” looks like leaves so many unheard, disbelieved, and dismissed.
I know that erasure—the exhaustion of explaining, the grief of watching people turn away because acknowledging the reality would require them to care differently. The way support is often conditional on how well we perform suffering in ways they recognize.
Thank you for naming this so clearly. Visibility shouldn’t be something we have to fight for, yet here we are.
“ The way support is often conditional on how well we perform suffering in ways they recognize.” — this could not be more true! So well-written, thank you. And yes, visibility should not be something we have to fight for.
Just yesterday I wrote a piece on the grief of chronic illness (how we grieve losses of abilities and losses of the dreams we had for a certain kind of future" and in it wrote:
When someone says, “But you don’t look sick,” it can feel like an erasure of their lived experience. It suggests that because their pain or limitations aren’t outwardly obvious, they must not be as severe as they say. This not only contributes to a lack of recognition for their grief but can also make them feel guilty for grieving at all.
I am sorry that you have experienced so much dismissal and making-invisible. I see you.
We were just talking about this in @Amber’s writing circle on Monday! I’m writing a piece, which I think will be bubbling a while before I post it, on this theme. Thank you for writing and sharing this, especially with cracking information which needs talking about more 💚
In some ways I have enjoyed the invisibility of not being seen, I’m old and frumpy and fat with diminished conventional beauty and most of the sexual harassment has faded thank goodness. But also I need to be seen in some situations, I need my anger to be felt. Yesterday I saw my dr who was making a huge fuss and hoha over what ended up being fairly insignificant blood test results but …. admitted she’d not realised about my ME, and knew nothing about it anyway. She was generally dismissive about it but did admit her ignorance and said I was the expert anyway. But I shouldn’t have to be the expert. I shouldn’t be having to look up drugs and how they work and if they are contradicted in ME - she should do that. She wasn’t ready to learn and take on my ME as something that interested her. It’s a good job I’m still capable of being my own advocate at times.
I so hear you regarding the sexual harassment! And no, we shouldn’t have to be experts, we have plenty to deal with already without having to be our own doctors. I daydream about doctors taking an interest…
What a powerful read! Hearing the words "I forgot, because you don't look sick" break my heart every time.
I am recovering from Guillain Barre right now, and the burden is immense. Having people dismiss such a huge pain cuts deep.
Fortunately, I get lots of support and accommodations for my physical needs, and I am getting better. But when it comes to my emotional ones... People often treat me as if nothing happened and I am fine, which makes me want to isolate even more.
This also happened before with my PTSD and just now am I starting to value and fight for my needs and quality of life. I deserve care, I deserve my pain to be seen and honored. I am not healthy, and this is not a reason to be ignored or looked down upon.
Eventually, your stop being quiet. You stop caring if people find you cringe, find you too dramatic. Or lives are already shortened, why waste them saving doctors with God complexes' feelings. I'm not unkind or disrespectful, but I speak my mind most of the time now. Still being denied ssdi though.
🙏🏻🍃❤️ Thank you Madelleine for the courage of truth-telling.
Although I am mostly house-bound, I actually went out for about an hour to a pub near our house with my partner; and I realised the ‘double-erasure’ of both becoming chronically ill - but also ageing. As women, we become so conditioned and a lot of our ‘identity’ defined by the male gaze.
And now, here I was, a middle-aged woman with her walking stick. So much radically altered by the invisibility of both my illness, my disablement and now by my ‘fading looks’… The anger that you spoke of last time - it can have a pure, revolutionary fire: ‘I may be changed by what happens in my life, but I refuse to be diminished by it’ - Maya Angelo. Stand/Lie Tall Women. We may be invisible but we are indivisible. ♥️
Yay pub-outing!! Sounds fun! And yes, you are so right about the double-erasure. I love that quote, thank you for sharing ❤️🌸
What took me by surprise (at the time) was how fast the disappearance and invisibility happened. One day I'm a regular person, with a job, a social life etc etc and then the next day, POOF. Disappeared. Invisible. Another layer of grief.
Exactly! POOF! And no one notices.
It's hard even when you KNOW. My lightbulb moment came sitting in a room full of chronic pain patient women. I was twisting in agony. They all looked so calm, content, pain-free...but I KNEW they were not. We were discussing horrors and torture.
And that's when I got it. That's what others see. Not the hours of pajama time, blackout curtains drawn, prostrate and miserable on my bed. Not the curled up couch drools. They just see me, my cute face, and maybe some stiff motions that barely scratch the surface of how much I hurt.
When I see my sweet friend who's sicker than I am, all I ever think is that she looks like SUCH A BABE. It's just impossible to grok what she's really going through.
But yes, our choices give us away. Our voices tell the story. The lack of access scoops us out of the public eye. We fight on so many fronts.
We do look awesome! 🤩 I think we have a sixth sense when it comes to pain I think. We can see it on people or just somehow know.
OMGosh, my invisible life! I felt this writing so hard. I am mostly homebound, myself. And spent years mostly in bed. When I was 24 I got mononucleosis and after it was "over" the exhaustion never got better. At 26, I would get a lot of cognitively crippling brain fog and was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. This was during grad school and I had to leave the Ph.D. program because of it as I could not physically keep up the requirements for full time matriculation. I graduated years later having taken that long to work on a masters thesis based on research I did while still active at the school in 2005.
I moved back to my home state with my fiance and got married. Doctors here did not believe in CFS, it was referred to as Yuppies Disease. Something that doctors thought "young, upwardly mobile people with nothing to complain about invented in their own minds." The fibro would give me nerve pain and I noticed what made it worse. Doctors didn't believe me. They saw I had a mood disorder diagnosis and attributed everything to that. One old doctor believed me, a neurologist, out of all the other docs in that insurance. I switched insurances after that.
I have basically been in and out (mostly in) of some kind of burnout for 26 years. The CFS and Fibro exacerbated a lot of my autistic sensory issues and adhd struggles. I didn't actually get a diagnosis for those, though, until 22 years later at the age of 47. I tried to get disability 14 years ago but the judge felt I was faking it. I cried after reading his personal letter to me. I had dreamed of being a scientist (among other things) since age 5 and having to walk away from a career in research due to my chronic health issues was devastating to my mood, my confidence and my self-identity. It took me years but I worked through all that and got to the other side.
Then perimenopause for a few years... did you know that autistic females experience that differently too? I had some expected symptoms (not expected by me as no one educated me or talked about it including my docs). I had a lot of unexpected symptoms and the "after hours" docs kept sending me to ER who had no idea what was causing the bizarre issues I was having. Then I learned about research going on in Europe and Canada on Autistic Perimenopause (of course not in the U.S.) and realized I wasn't crazy and I wasn't alone. I connected with others quickly after that.
Today I have a social time in person at my home, maybe once a week. I host a table top game night. My fellow gamers are also neurodivergent and queer and deal with disabilities. They are all able to hold down a job which is awesome for them. I wish I could. I am trying to get my arts business going so I can work as I am able to. Before that I volunteered with the League of Women Voters at the local level. And before that I ran a circus/flow arts festival.
I don't currently have any help with my pain or fatigue, mind fog, etc. I have been dealing with this on my own mostly for 26 years. I take tylenol and drink a lot of coffee. (I tried no caffeine for 2 years and I was a zombie. It didn't work for me.) My docs have been little help. The sad thing is I am on my husbands insurance through his job and it is good insurance as it goes here and I still haven't had any relief. I heard about some stuff in autistic spaces online recently for chronic pain that I will be checking out soon, though, with my doc.
I apologized for the novel. Just commiserating and hoping to make some kind of connection and find people who understand.
Thank you so much for sharing your experience. I had no clue that perimenopause showed up differently in autistic women. Thanks for educating us. What an ordeal with doctors and social service judges and what not — what gaslighting! And thinking you’re faking it! Aargh no one does that! It makes me so happy to hear about your social time, although I’m sure you just wish there was more of it too. Much love to you ❤️🌸
I read your story with interest, thank you for taking the time to write it.
So sorry to hear about your life long experience with such little and dismissive be support.
I’ve only recently heard of autistic perimenopause being very different - only because autistic women on here are writing about it. Let me know if you’d like links if you aren’t already connected.
I believe so much in the power of sharing our story so thank you for sharing yours.
I am really done with hearing how beautiful I look. What people mean as a compliment just comes across as dismissive and insensitive. You are absolutely right - my illness can be seen, in many ways. We are indeed made invisible. Thank you for this important piece.
❤️🌸
Ah man. I heard it, too. And I am supposed to be happy about it, because it is a compliment? I mean, yes it is, but context matters. If you are getting ready for going out and you ask how do I look in that outfit sure. But when you share about your health struggles... Offf, it feels like a slap in the face. No. Just no.
Absolutely invisible auto-immune issues. In fact, I rarely even tell people about it because it’s so easy for them to forget or not believe me. Just more hassle. Sending hugs.
❤️🌸 Hugs right back your way.
This is an incredible, and necessary, piece. I struggle so much with how my illnesses are seen as invisible, whilst having a deep embodied knowledge that my illness touches everything i do—that it is there. and yet, people can’t (or refuse to) see it. thank you for bringing this to attention. 💓
I really struggle with this too ❤️🌸
Thanks for providing all the insightful information alongside such shocking lived experience. I’m sorry people dismissed you to the extent and in the way they did.
Thanks for reframing in this way too “we aren’t invisible. We are made invisible”.
I’ve been reading Unwell Women and we set the medical system up this way - to gaslight, dismiss, make judgements and assumptions , all whilst ignoring the patients voice and needs.
I wrote a piece the other year titled Invisible Me detailing what I’d done to make myself seen:
Connecting to my own inner knowing
Rescuing myself
Identifying my needs and putting in place measures to meet them
Doing what I could when I could
Journalling the crap out of all my problems
Becoming my own best friend, advocate & cheerleader
Thankful everyday for the privilege and capacity I had available to do this 🙏
https://warriorwithin.substack.com/p/invisible-me
These are great points, Amber, thank you for sharing. Unwell Women is a great book!
Madelleine, this resonates deeply. It’s not that chronic illness is invisible—it’s that too many people refuse to see it. The way illness is measured against outdated, narrow expectations of what a “real patient” looks like leaves so many unheard, disbelieved, and dismissed.
I know that erasure—the exhaustion of explaining, the grief of watching people turn away because acknowledging the reality would require them to care differently. The way support is often conditional on how well we perform suffering in ways they recognize.
Thank you for naming this so clearly. Visibility shouldn’t be something we have to fight for, yet here we are.
“ The way support is often conditional on how well we perform suffering in ways they recognize.” — this could not be more true! So well-written, thank you. And yes, visibility should not be something we have to fight for.
Just yesterday I wrote a piece on the grief of chronic illness (how we grieve losses of abilities and losses of the dreams we had for a certain kind of future" and in it wrote:
When someone says, “But you don’t look sick,” it can feel like an erasure of their lived experience. It suggests that because their pain or limitations aren’t outwardly obvious, they must not be as severe as they say. This not only contributes to a lack of recognition for their grief but can also make them feel guilty for grieving at all.
I am sorry that you have experienced so much dismissal and making-invisible. I see you.
This is so true, Kathryn, thank you for sharing!
We were just talking about this in @Amber’s writing circle on Monday! I’m writing a piece, which I think will be bubbling a while before I post it, on this theme. Thank you for writing and sharing this, especially with cracking information which needs talking about more 💚
Oh awesome! 🙌
An inspiring piece!
In some ways I have enjoyed the invisibility of not being seen, I’m old and frumpy and fat with diminished conventional beauty and most of the sexual harassment has faded thank goodness. But also I need to be seen in some situations, I need my anger to be felt. Yesterday I saw my dr who was making a huge fuss and hoha over what ended up being fairly insignificant blood test results but …. admitted she’d not realised about my ME, and knew nothing about it anyway. She was generally dismissive about it but did admit her ignorance and said I was the expert anyway. But I shouldn’t have to be the expert. I shouldn’t be having to look up drugs and how they work and if they are contradicted in ME - she should do that. She wasn’t ready to learn and take on my ME as something that interested her. It’s a good job I’m still capable of being my own advocate at times.
I so hear you regarding the sexual harassment! And no, we shouldn’t have to be experts, we have plenty to deal with already without having to be our own doctors. I daydream about doctors taking an interest…
Oo, wouldn’t that be nice 😊
When someone says, “you don’t look sick”, I want to say, “I’m sick, not ugly” 😂🤣😂 check out my latest post 5 Things you Should Never Say to Someone With Chronic Illness https://migrainegirl.substack.com/p/never-say-to-chronically-ill
What a powerful read! Hearing the words "I forgot, because you don't look sick" break my heart every time.
I am recovering from Guillain Barre right now, and the burden is immense. Having people dismiss such a huge pain cuts deep.
Fortunately, I get lots of support and accommodations for my physical needs, and I am getting better. But when it comes to my emotional ones... People often treat me as if nothing happened and I am fine, which makes me want to isolate even more.
This also happened before with my PTSD and just now am I starting to value and fight for my needs and quality of life. I deserve care, I deserve my pain to be seen and honored. I am not healthy, and this is not a reason to be ignored or looked down upon.
All the emotional stuff with chronic illness is so tough! It’s heartbreaking when we aren’t seen. Thank you for sharing 🌸
Thank you. It is indeed!
Eventually, your stop being quiet. You stop caring if people find you cringe, find you too dramatic. Or lives are already shortened, why waste them saving doctors with God complexes' feelings. I'm not unkind or disrespectful, but I speak my mind most of the time now. Still being denied ssdi though.
Good on you for speaking your mind!