So much food for thought here and so many salient points. I’m not sure where I stand with how shaped or defined by illness I am or I’m not so going to sit with that one a little.
Though using this instruction as an example “Don’t let illness define you” is something I would have previously described as “noise”. Don’t do this, don’t do that. You should be doing this you should be doing that. You can’t do this, you can’t do that. The ‘noise’ of all these statements was something I learnt to drown out at the time I found myself disabled by the illness I’d told doctors I’d been living with for 20years. It was like I woke up to what I knew to be true all along and one of the first things I did was learn to drown out the noise of everyone around me (friends, family, boyfriend, medical professionals included) and began to tune in to what I knew to be true all along. It was this way of being that got me started (6 years ago next month).
I was told I was selfish for doing it, that I didn’t know what I was doing, that I was too vulnerable to make decisions regarding my own health….more noise😒
On I continued to drown out the noise and tune into what I knew to be true all along.
It’s now the single most biggest thing I’m proud of myself for in my entire life. It feels like nothing will ever top this level of achievement.
It looked crazy to others but it reduced a lot of inner conflict in me.
I love your reflections, Amber ❤️🌸 And YES, describing this as ‘noise’ is perfect, all these ‘shoulds’ that people (often with no experience of illness) dump on us. I try, but it’s a huuge challenge for me to drown out this noise, there is a lot of it.
Reflecting on the noise I remember back to when there was so much of it in my life it was overwhelming and soul destroying. It took me a long time to remove myself from those environments and a lot of therapy in the form of counselling. It took me a long time to question the part this role played in my journey to answer the question did I need this or could I have skipped right on to the deep healing part? (we’re talking years sitting with this question) and the conclusion I came to was yes, yes it was an essential and much needed part of this journey, because the mental strength I wound up with (even though the deterioration to physical health continued) played a great part in waking up to a newfound ability to drown out this level of noise and stay steadfast to what I knew to be true.that and I could no longer drag myself to some of the environments involved but those kinds of blessings were very much in disguise at the time.
I’ve given some deeper thought to the whole “don’t let your chronic illness define you”. It’s just more dismissal, more gaslighting, more minimising our experience. Unintentionally in many cases I’m sure, however this is the continued outcome. Defining chronic illness, understanding it, researching it, making sense if it has been very important to me. Acknowledging it, accepting it, working with it. It’s all led to transmuting it. Being disabled by it I now see as a gift - because it opened up space and time for me to do what I’ve done to transmute it and find my way through it. So if people see that as being defined by it, then I did let it define me and I have zero regrets. I am only thankful now for what it has opened up to me. It’s like that conversation we had before your break - there are no people in the history of many kind that have loved with what we’ve/we are living with. That have done the work, done the research and have the insight, perspective and understanding that we now have. We are in territory’s previously unknown and explored by mankind. Finding our voice, sharing our stories. That makes us very powerful
I soo agree with this! And I think there is something very positive in letting ourselves be defined by our illness and disability. Like I wrote, there is some underlying ableism in the phrase ‘don’t let illness define you’ that suggests illness and disability are bad to be defined by.
Absolutely, yeah it is seen as bad/wrong when it’s not. Have you read the book Freedom From the Known? It was a yoga teacher training recommended read (I ordered the entire list recommended to us and read them all😆). It’s a small book but the main takeaway for me was that all our labelling of good/bad, positive/negative, right/wrong has sent us off track. There really is no such thing. However the conditioning runs deep. Very deep. I’ve been unlearning this to the best of my ability (but still use the words occasionally). During my last (low level) migraine attack (recent), I realised we have labelled this as bad. Yet deep healing was happening simultaneously. There always feels a much bigger picture to the singular way of looking at things we’ve become accustomed to and I connect to it even when I’m symptomatic (note that whilst I’m saying it’s us that’s labelled it as bad, I’m not suggesting that this is good either - just that there’s a much bigger picture and a deeper understanding to be seen/had). Hopefully I’m making sense🙃
My brain inflammation is so long lasting and feels like a torturous acoustic attack that presses into a "center of suffering" in the brain. This is different for everyone, because some describe it differently, and I didn't feel that until my spinal leak and severe ME came together.
So I think whenever there's torture, it's impossible to be yourself. We would also never suggest to someone that is tortured to be positive.
My identity is what's important for me, to me connection, creativity and curiosity. If my brain inflammation prevents that, it defines me 100%. If I can ignore it enough to do small versions of it, it does still define me but I can also be true to a version of myself. For instance, I can write my truth, choose how long I want to be on this earth. That's also part of my identity.
Such great reflections here! I would say, too, that brain inflammation is what defines me the most… or… maybe more precisely put: steals away my identity and expression in this world. I love this: “I can also be true to a version of myself”. I think that’s what I meant when I said “it doesn’t define our soul’, as in there is always a piece of us that is ours alone.
Yes, and if that's not possible anymore it will live in our memories and connections. I also have a spinal csf leak and together with other problems, the inflammation does rape my soul, I would say. But there is still the distinction between the rapist and the soul, even though it is the own body. Sorry for the strong words.
Perfect words! So powerful, and it so resonates. I always tell people that it’s like PTSD, but no ‘post’ because you’re still living with the perpetrator.
In the past I’ve wondered how can I not have ptsd? Isn’t this the same thing? Like you say without the post when you’re still living with it. I haven’t read anything into it to see if it’s talked about or understood in this way, but I can’t see how it can’t not be.
I don’t feel we yet understand or identify this as the ttrauma it is. Even though the access to all the science, evidence and research is there (in relation to childhood trauma, the nervous system etc), medically the majority still not know what to do with it. So I guess we are a long way off from recognising that medical ptsd and how can we not all (or most) be living with it is a long way off.
I am sorry to hear that you live with what you describe as torturous, I feel that. Being positive or being advised to be positive is also more noise I don’t believe in. (Even though it’s the number one compliment people give me - I’m not always positive and tbh how about the times I was faking it? There’s much more going on beneath any facade). I love that you describe your identity as connection, creativity and curiosity 🥰 “I can write my truth, choose how long I want to be on this earth.” W😍W
A friend of some years actually remarked that I was doing well because I could get out of bed, extremely slowly and creakily, and just about manage to reach into a bookcase while half on and half off of the side of my profiling bed.
And this was only because I didn’t have the energy to tell her its name. And because I can’t stand anymore!
Argh I hate those kinds of remarks. I get them a lot from one of my friends too and I’ve started getting better at snapping back and telling her that just because I can sit up for one more minute doesn’t mean I’m doing well… and I’m most likely in more pain.
My mom has picked up the mantra of “Don’t let your chronic illness define you”. It’s created a bit of a rift between us because I’m hard on the radical acceptance train and I’m just living as best as I can.
I’ve been struggling with this a lot. I don’t want my illness to define me, but all the points that you brought up are exactly what makes it hard for it not to. I’m three years into severe disability and I’m still trying to reconcile my new reality. I’ve come to terms with it, but I’m still trying to etch out who I am now. People who haven’t gone through this cannot understand how long just coming to terms can take.
I also have a strong yoga background and my teacher (along with many others) often talk about “not succumbing to it” as if it’s a choice. I’ve actually been told point blank that if I don’t want to be an invalid, I need to get up. Only people with zero comprehension of what we deal with would say something like that without hesitation. I have this conditioning in my mind that I’m trying to dismantle. There’s this part of me that feels like if I do let my illness define me then I’m accepting that recovery isn’t possible and I know how flawed that thinking is.
Hi Keisha! Good to see you here. I so relate to everything you say. I had to do a lot of ableist-detoxing from the yoga world, to be honest. In fact, it was only when I fully embraced my illness that I started recording my album from bed/wheelchair. I kept waiting and waiting to be better so I could record like an abled person, but it was only when I started thinking like a disabled person that I figured out how to record my stuff in a way that suited my body. Sometimes, it can be a good thing to embrace and identify with your illness. It doesn’t make you weak, but it may help you see things differently.
I appreciate your response, you’ve given me some food for thought! Yeah, I’ve been very disappointed with a lot of the mentality coming from the yoga world. I’m definitely tired of waiting to get better, although I was mostly vegetative for two years, so I’m already miles better than I was. It’s crazy because I know I will have my collection of conditions for the rest of my life and I accept that but I still have a hard time embracing any of it. I’ve been thinking about it since yesterday and I’m realizing that I truly don’t want to, but maybe that’s okay for my journey. Or maybe I just need more time. I don’t know, still working on my path.
I soo hear you. It is near i possible to embrace illness like this. For me, I do it in momenta in order to think my way to better solutions. As in, I can’t stay in a state of embracing my disability. I go back and forth.
Fair point. I used to see her every week before the relapse in February 2023. Now it’s about every 6 or 8 weeks. I don’t really have the energy to explain. And now I have 4 lovely supportive virtual friends thanks to Google Meet. I don’t contact her she messages me occasionally to set up a visit. I’ve not quite yet learned to set boundaries. Note to self!
Ah I see that. It sounds like she isn’t someone you want to invest in. That’s fair enough. And boundaries requires a lot of energy, it’s hard and can wipe you out when you’re ill.
It’s so hurtful. It stung for the rest of the day. They just don’t get it. I guess most people just don’t have any empathy if they haven’t had direct experience. Should I ditch her?
Could you explain it to her? My best friend says crappy stuff sometimes and I have to educate and explain to her what it does to me. She listens and grows. If your friend is willing to listen and grow then she could be worth keeping…
I was really unwell for about six years before I started to feel much better for which I’m very grateful. It absolutely did define a period of my life and shaped who I was. It continues to shape me now because it has changed so many things about how I live and how I see the world and the kind of people I want to be around.
I found it very hard to separate out myself and the symptoms and not berate myself for not being fitter, stronger, better, blah, blah blah. However, once I embraced some kind of acceptance of my limitations and my newfound disability, I lived a much happier life. I fought against it less, I met the people in similar position and learnt a lot from them and learnt a lot about the disabled community and ableism generally.
I loved this piece Madelleine, I've been thinking about it for a few days 😊 absolutely relate to this dilemma! I definitely want people to see my illness and see the changes that my illness has made in me – feel those changes are so important to who I am now. But at the same time, there’s the need for people to see I’m so much more than my illness. Thanks for your writing. 😊
First off: this was beautiful and I resonate with everything here. I think part of it is that we don't exist in a dualistic world. We can hold that illness *doesn't* define us, but in some ways... it does? Both can be true. I finally started reading Anne Boyer's The Undying, and a lot of the existential and philosophical conundrums of identity vs person-centered language strike a chord with me, especially also reading this. The timing of syncs :)
IMHO: I'm still stuck in this world of coping with what illness looks like for me, and how it impacts my body. It's been a challenge so far, but I think one of the things to do is just take it day by day.
I'd also recommend Eva Meijer's The Limits of my Language. I think both of those books have given me an understanding about my illnesses and the intersection between physical and mental health. Let me know how you like it too :)
This was SO well articulated Madelleine. And 1000% accurate everything you said! I think ‘don’t let it define you’ comes under the same umbrella as ‘just stay positive!!!’
And to answer your Q, I don’t think it is possible to not let an illness define you. Especially if it makes you unable to work/bedbound etc. As you said it affects absolutely every aspect of life. It is incomprehensible to suggest that it doesn’t define you - however I don’t think that it needs to be negative. It can define your identity in ways which are more positive- like changing your perception on the world, changing your relationship with yourself or bringing in new aspects to your life. If I wasn’t chronically ill I wouldn’t have a newsletter, which I love!!! I think it’s about instead of thinking the illness is all I am, it’s about thinking it is a part of me but I am so many other things aswell. It’s hard tho especially at the beginning when everything feels deeply unjust and out of control. I think your relationship with sickness identity takes time.
So much food for thought here and so many salient points. I’m not sure where I stand with how shaped or defined by illness I am or I’m not so going to sit with that one a little.
Though using this instruction as an example “Don’t let illness define you” is something I would have previously described as “noise”. Don’t do this, don’t do that. You should be doing this you should be doing that. You can’t do this, you can’t do that. The ‘noise’ of all these statements was something I learnt to drown out at the time I found myself disabled by the illness I’d told doctors I’d been living with for 20years. It was like I woke up to what I knew to be true all along and one of the first things I did was learn to drown out the noise of everyone around me (friends, family, boyfriend, medical professionals included) and began to tune in to what I knew to be true all along. It was this way of being that got me started (6 years ago next month).
I was told I was selfish for doing it, that I didn’t know what I was doing, that I was too vulnerable to make decisions regarding my own health….more noise😒
On I continued to drown out the noise and tune into what I knew to be true all along.
It’s now the single most biggest thing I’m proud of myself for in my entire life. It feels like nothing will ever top this level of achievement.
It looked crazy to others but it reduced a lot of inner conflict in me.
I love your reflections, Amber ❤️🌸 And YES, describing this as ‘noise’ is perfect, all these ‘shoulds’ that people (often with no experience of illness) dump on us. I try, but it’s a huuge challenge for me to drown out this noise, there is a lot of it.
Reflecting on the noise I remember back to when there was so much of it in my life it was overwhelming and soul destroying. It took me a long time to remove myself from those environments and a lot of therapy in the form of counselling. It took me a long time to question the part this role played in my journey to answer the question did I need this or could I have skipped right on to the deep healing part? (we’re talking years sitting with this question) and the conclusion I came to was yes, yes it was an essential and much needed part of this journey, because the mental strength I wound up with (even though the deterioration to physical health continued) played a great part in waking up to a newfound ability to drown out this level of noise and stay steadfast to what I knew to be true.that and I could no longer drag myself to some of the environments involved but those kinds of blessings were very much in disguise at the time.
This is very inspiring! Thank you for your thoughts on this ❤️
I’ve given some deeper thought to the whole “don’t let your chronic illness define you”. It’s just more dismissal, more gaslighting, more minimising our experience. Unintentionally in many cases I’m sure, however this is the continued outcome. Defining chronic illness, understanding it, researching it, making sense if it has been very important to me. Acknowledging it, accepting it, working with it. It’s all led to transmuting it. Being disabled by it I now see as a gift - because it opened up space and time for me to do what I’ve done to transmute it and find my way through it. So if people see that as being defined by it, then I did let it define me and I have zero regrets. I am only thankful now for what it has opened up to me. It’s like that conversation we had before your break - there are no people in the history of many kind that have loved with what we’ve/we are living with. That have done the work, done the research and have the insight, perspective and understanding that we now have. We are in territory’s previously unknown and explored by mankind. Finding our voice, sharing our stories. That makes us very powerful
Indeed.
I soo agree with this! And I think there is something very positive in letting ourselves be defined by our illness and disability. Like I wrote, there is some underlying ableism in the phrase ‘don’t let illness define you’ that suggests illness and disability are bad to be defined by.
Absolutely, yeah it is seen as bad/wrong when it’s not. Have you read the book Freedom From the Known? It was a yoga teacher training recommended read (I ordered the entire list recommended to us and read them all😆). It’s a small book but the main takeaway for me was that all our labelling of good/bad, positive/negative, right/wrong has sent us off track. There really is no such thing. However the conditioning runs deep. Very deep. I’ve been unlearning this to the best of my ability (but still use the words occasionally). During my last (low level) migraine attack (recent), I realised we have labelled this as bad. Yet deep healing was happening simultaneously. There always feels a much bigger picture to the singular way of looking at things we’ve become accustomed to and I connect to it even when I’m symptomatic (note that whilst I’m saying it’s us that’s labelled it as bad, I’m not suggesting that this is good either - just that there’s a much bigger picture and a deeper understanding to be seen/had). Hopefully I’m making sense🙃
My brain inflammation is so long lasting and feels like a torturous acoustic attack that presses into a "center of suffering" in the brain. This is different for everyone, because some describe it differently, and I didn't feel that until my spinal leak and severe ME came together.
So I think whenever there's torture, it's impossible to be yourself. We would also never suggest to someone that is tortured to be positive.
My identity is what's important for me, to me connection, creativity and curiosity. If my brain inflammation prevents that, it defines me 100%. If I can ignore it enough to do small versions of it, it does still define me but I can also be true to a version of myself. For instance, I can write my truth, choose how long I want to be on this earth. That's also part of my identity.
Such great reflections here! I would say, too, that brain inflammation is what defines me the most… or… maybe more precisely put: steals away my identity and expression in this world. I love this: “I can also be true to a version of myself”. I think that’s what I meant when I said “it doesn’t define our soul’, as in there is always a piece of us that is ours alone.
Yes, and if that's not possible anymore it will live in our memories and connections. I also have a spinal csf leak and together with other problems, the inflammation does rape my soul, I would say. But there is still the distinction between the rapist and the soul, even though it is the own body. Sorry for the strong words.
Perfect words! So powerful, and it so resonates. I always tell people that it’s like PTSD, but no ‘post’ because you’re still living with the perpetrator.
In the past I’ve wondered how can I not have ptsd? Isn’t this the same thing? Like you say without the post when you’re still living with it. I haven’t read anything into it to see if it’s talked about or understood in this way, but I can’t see how it can’t not be.
There is so little if any research into medical PTSD… we need more.
I don’t feel we yet understand or identify this as the ttrauma it is. Even though the access to all the science, evidence and research is there (in relation to childhood trauma, the nervous system etc), medically the majority still not know what to do with it. So I guess we are a long way off from recognising that medical ptsd and how can we not all (or most) be living with it is a long way off.
<3
I am sorry to hear that you live with what you describe as torturous, I feel that. Being positive or being advised to be positive is also more noise I don’t believe in. (Even though it’s the number one compliment people give me - I’m not always positive and tbh how about the times I was faking it? There’s much more going on beneath any facade). I love that you describe your identity as connection, creativity and curiosity 🥰 “I can write my truth, choose how long I want to be on this earth.” W😍W
THIS: 'My body is weak, but I’m not. My brain is slow, but I’m not.'
Respect. Well said. Nodding vigorously and applauding. Thank you for using your precious time and energy to write this Madelleine.
❤️🌸🌻🌺
It’s so true. Everything you say Madelleine!
A friend of some years actually remarked that I was doing well because I could get out of bed, extremely slowly and creakily, and just about manage to reach into a bookcase while half on and half off of the side of my profiling bed.
And this was only because I didn’t have the energy to tell her its name. And because I can’t stand anymore!
I was so taken aback I couldn’t snappily retort.
I should have landed her one for her smug remark!
Argh I hate those kinds of remarks. I get them a lot from one of my friends too and I’ve started getting better at snapping back and telling her that just because I can sit up for one more minute doesn’t mean I’m doing well… and I’m most likely in more pain.
My mom has picked up the mantra of “Don’t let your chronic illness define you”. It’s created a bit of a rift between us because I’m hard on the radical acceptance train and I’m just living as best as I can.
I’m so sorry to hear that it’s created a rift between you two. I hope she will come to understand some day ❤️🌸
Yes. Yes. Yes.
Adjacent question: how do you add the voiceover to your article? I would like to do that for accessibility reasons for my posts. Thanks!
I use Revoicer, but I think Substack has an in built option too.
I’ve been struggling with this a lot. I don’t want my illness to define me, but all the points that you brought up are exactly what makes it hard for it not to. I’m three years into severe disability and I’m still trying to reconcile my new reality. I’ve come to terms with it, but I’m still trying to etch out who I am now. People who haven’t gone through this cannot understand how long just coming to terms can take.
I also have a strong yoga background and my teacher (along with many others) often talk about “not succumbing to it” as if it’s a choice. I’ve actually been told point blank that if I don’t want to be an invalid, I need to get up. Only people with zero comprehension of what we deal with would say something like that without hesitation. I have this conditioning in my mind that I’m trying to dismantle. There’s this part of me that feels like if I do let my illness define me then I’m accepting that recovery isn’t possible and I know how flawed that thinking is.
Hi Keisha! Good to see you here. I so relate to everything you say. I had to do a lot of ableist-detoxing from the yoga world, to be honest. In fact, it was only when I fully embraced my illness that I started recording my album from bed/wheelchair. I kept waiting and waiting to be better so I could record like an abled person, but it was only when I started thinking like a disabled person that I figured out how to record my stuff in a way that suited my body. Sometimes, it can be a good thing to embrace and identify with your illness. It doesn’t make you weak, but it may help you see things differently.
I appreciate your response, you’ve given me some food for thought! Yeah, I’ve been very disappointed with a lot of the mentality coming from the yoga world. I’m definitely tired of waiting to get better, although I was mostly vegetative for two years, so I’m already miles better than I was. It’s crazy because I know I will have my collection of conditions for the rest of my life and I accept that but I still have a hard time embracing any of it. I’ve been thinking about it since yesterday and I’m realizing that I truly don’t want to, but maybe that’s okay for my journey. Or maybe I just need more time. I don’t know, still working on my path.
I soo hear you. It is near i possible to embrace illness like this. For me, I do it in momenta in order to think my way to better solutions. As in, I can’t stay in a state of embracing my disability. I go back and forth.
That makes total sense!
Fair point. I used to see her every week before the relapse in February 2023. Now it’s about every 6 or 8 weeks. I don’t really have the energy to explain. And now I have 4 lovely supportive virtual friends thanks to Google Meet. I don’t contact her she messages me occasionally to set up a visit. I’ve not quite yet learned to set boundaries. Note to self!
Ah I see that. It sounds like she isn’t someone you want to invest in. That’s fair enough. And boundaries requires a lot of energy, it’s hard and can wipe you out when you’re ill.
It’s so hurtful. It stung for the rest of the day. They just don’t get it. I guess most people just don’t have any empathy if they haven’t had direct experience. Should I ditch her?
Could you explain it to her? My best friend says crappy stuff sometimes and I have to educate and explain to her what it does to me. She listens and grows. If your friend is willing to listen and grow then she could be worth keeping…
I was really unwell for about six years before I started to feel much better for which I’m very grateful. It absolutely did define a period of my life and shaped who I was. It continues to shape me now because it has changed so many things about how I live and how I see the world and the kind of people I want to be around.
I found it very hard to separate out myself and the symptoms and not berate myself for not being fitter, stronger, better, blah, blah blah. However, once I embraced some kind of acceptance of my limitations and my newfound disability, I lived a much happier life. I fought against it less, I met the people in similar position and learnt a lot from them and learnt a lot about the disabled community and ableism generally.
I love everything you’re saying here! And I so agree how illness amd disability does define us in awesome ways ❤️🌸
I loved this piece Madelleine, I've been thinking about it for a few days 😊 absolutely relate to this dilemma! I definitely want people to see my illness and see the changes that my illness has made in me – feel those changes are so important to who I am now. But at the same time, there’s the need for people to see I’m so much more than my illness. Thanks for your writing. 😊
Thank you for your reflections ❤️🌸
First off: this was beautiful and I resonate with everything here. I think part of it is that we don't exist in a dualistic world. We can hold that illness *doesn't* define us, but in some ways... it does? Both can be true. I finally started reading Anne Boyer's The Undying, and a lot of the existential and philosophical conundrums of identity vs person-centered language strike a chord with me, especially also reading this. The timing of syncs :)
IMHO: I'm still stuck in this world of coping with what illness looks like for me, and how it impacts my body. It's been a challenge so far, but I think one of the things to do is just take it day by day.
I so hear everything you say here, and yes, it’s not dualistic, it’s both, in my opinion. Thank ypu for the book recommendation, will check it out!
I'd also recommend Eva Meijer's The Limits of my Language. I think both of those books have given me an understanding about my illnesses and the intersection between physical and mental health. Let me know how you like it too :)
This was SO well articulated Madelleine. And 1000% accurate everything you said! I think ‘don’t let it define you’ comes under the same umbrella as ‘just stay positive!!!’
And to answer your Q, I don’t think it is possible to not let an illness define you. Especially if it makes you unable to work/bedbound etc. As you said it affects absolutely every aspect of life. It is incomprehensible to suggest that it doesn’t define you - however I don’t think that it needs to be negative. It can define your identity in ways which are more positive- like changing your perception on the world, changing your relationship with yourself or bringing in new aspects to your life. If I wasn’t chronically ill I wouldn’t have a newsletter, which I love!!! I think it’s about instead of thinking the illness is all I am, it’s about thinking it is a part of me but I am so many other things aswell. It’s hard tho especially at the beginning when everything feels deeply unjust and out of control. I think your relationship with sickness identity takes time.
I so agree with everything you say here 💕🥰🌸