I think what helps me the most with this loneliness is having chronically ill & disabled friends who I know will support me, let me complain, send a pain patch or money for food if needed. More of an interdependent relationship. Capitalism tends to create independent individuals & messaging about do it yourself but if we build community, even if online only, we can move beyond that to we are in this together❣️❣️❣️
We are kicked out of the capitalist machinery when we are chronically ill in ways that can no longer serve its hyperproductivity. So we’d feel lonely anywhere because everyone and everything else is caught up in it.
Much like when Adam and Eve got kicked out of the garden of Eden! Were we ever really in it in the first place or is it all just made up and now we’re calling it our reality?
Oof, thank you Madelleine, that definition of loneliness applies, for sure. I also have people in my life who I *could* ask—for company, for practical help—and when I am aware how stretched they are with their own struggles, their immediate family, their demanding work etc. it feels wrong to call on them. Its hard to do collective action when we’re all isolated in our individual struggles, and it seems precious few of us (well or unwell) are truly getting our needs met.
I so feel this! It’s odd, because the people who are most likely to offer me help and company are those who need it the most themselves. And it’s so true, so few of us get our needs met. Capitalism itself causes loneliness.
I didn’t ask for help or approach any of my friends for the exact reason you speak to here Michelle. I was suicidely depressed and knew I had friends who I could reach out but the story I told myself was that they were too busy, had their own lives and family to tend to. (It’s the same story I grew up with and why I didn’t ever go to my mum about anything as a child but I didn’t know that at the time).
Identifying my needs and getting creative about the ways in which I could meet those needs was one of the first set of actions I took at the point of finding myself disabled by the illness I’d kept quiet about for 20 years (in 2018).
It was something I did intuitively at the time and when I spoke up about it I received a great deal of confirmation that such services did not exist - none of the systems had been designed to meet the needs the people had. Irrespective of whether you had paid your taxes for decades or not. Also something I didn’t realise at the time, I found myself having to step outside of the system and find other ways that aligned with what I knew to be true.
This is a fascinating topic - it’s unravelling and helping me process alot.
Hope you are ok Michelle. Thank you for being here 🩵
I did a lot of work on identifying and expressing my needs too. It helped in terms of my family supporting me. And yes, no services that could really help me. It’s scary.
Definitely more services on paper than in real life. Even as lucky to have savings to spend its hard spreading the help I can get out enough, sometimes. Needing a day in bed but the cleaner is coming, and she’s fully booked all other days… having to take appointments late in the afternoon when I’m often a bit zombie like because that’s when I can get seen, etc. And I’m well enough to live on my own (with help).
I still remember having the balls to ask my neurologist “what support is available to me?”To which he replied “there is none”. - at least I knew and it was brutally honest. I needed honesty.
It got me wondering ‘what is the point in putting myself through this if all I’m going to leave with is another migraine attack?’. I went back one last time having made the changes he advised not to bother making (and some more) and haven’t seen a medical professional for a personalised visit since (though I have been researching the worlds top neurologists online and accessing medical care in a different way, one in which supports my needs).
I’ve woken up feeling worthy today (a first). And I’m so proud of all past versions of me who made up stories to pass the time to her awakening and remembering 💜
I’ve done a lot of healing around the anger i feel towards it (valid) and the blame I’ve been carrying (disempowering).
It’s helped me to recognise our healthcare system is there to save our lives and treat disease. Something we can truly be thankful for. It is not there to create health - something we can learn to do ourselves. It’s helped a lot.
Thanks for asking, Amber. I’m ok enough. Still have some savings for support services 🙏🏻 so I have oodles of privilege, and its bloody hard. I suspect a lot of poorer people simply die from overwork or neglect.
It’s bloody hard. I’ve been so triggered by brief convos on privilege so many times (whilst honouring the fact I have stacks of it the entire time). Going ever deeper into what’s triggering me - taking me back to a deeper connection with my ancestors at the deepest end. I’ve reached the conclusion that privilege makes what we’re doing possible - in a way that wasn’t accessible to our ancestors and still isn’t possible to a great many a number. But it doesn’t make doing any of this work any easier.
I’ve been feeling so “lonely” but not quite. And your article explained it. It’s the loneliness from being gaslit and ignored from society. People move on. Doctors don’t really care. No one really cares about me except my parents and my partner. I often think of how horrific life will be if my parents weren’t here. If something happens one day and I’m alone I’ll have no one who really loves me. That’s lonely. I am totally disabled and cannot work or function with basic needs from ME and CCI/AAI. Thanks for sharing
Very well put! about a state of mind that runs rampant through an unseen world of chronically ill individuals as we navigate an increasingly isolating world.
I don't feel "lonely" either; it's that other, bigger, more complicated thing.
Yes! Not feeling supported by society is huge! The energy used when people simply do not understand what chronic illness means, very much including medical professionals is so frustrating. I find wearing a mask ramps up the lack of understanding too 😥
Feeling unsupported and uncared for is how I’ve grown up my entire life! I did not realise until recent years of course, that this was connected to a wider, global, systemic issue.
Following what happened to me in 2018, I felt cast aside by society. As if slung on to a scrap heap with all the other chronic illness warriors (though I had no idea there were mountains of us at that time).
I came to realise that my greatest need was for support. I came to realise that the greatest travesty throughout all my life was the lack of it - especially emotional support (though of course our finances, physical, mental and spiritual cannot be overlooked either - even though they most are).
I’ve covered a sizeable section on support in my next book. A triangle of support that consists self support, support from others and support from greater purpose/system.
What’s interesting is that when we speak of it, it’s always seen as ‘outside’ of ourselves. Unreachable. Unattainable.
It’s only in the creation of my 2nd book have I realised that I became that support that I so desperately longed for and needed myself. I connected with a greater purpose support network.
Interestingly, only then did it go on to create shifts in my physical reality that later led to me bringing in the support from others. Although a little of it came from our systems (thank you ssp and universal income🙏), much of it came from stepping outside of these systems.
My book is forever evolving and coming to life in even greater ways. It’s new edge is that as it is speaking to all sides of that which hasn’t been spoken to before (not in such depth or all at once anyway), it will be guiding readers to become their own support, their own best friend, their own cheerleader. It will guide from a place of survival (we need to be speaking to this, because to survive all we are is no mean fete) to what comes next and how to rise and thrive - moving beyond existing paradigms and loneliness to the depths you speak of here. Essentially, rewriting our own story.
It’s become clear recently that it’s this that will lead to systemic change. The work we’re doing here, now. It won’t come from the people in power. We must take back our own. In whatever small ways we can.
In other news, I can’t stop listening to your song on repeat. I’ve added it to my healing playlist that I play during client treatments and I’ve sent it on to all my friends who I feel will deeply connect 💜
Yes! Not feeling supported by society is huge! The energy used when people simply do not understand what chronic illness means, very much including medical professionals is so frustrating. I find wearing a mask ramps up the lack of understanding too 😥
I think what helps me the most with this loneliness is having chronically ill & disabled friends who I know will support me, let me complain, send a pain patch or money for food if needed. More of an interdependent relationship. Capitalism tends to create independent individuals & messaging about do it yourself but if we build community, even if online only, we can move beyond that to we are in this together❣️❣️❣️
I love this! Interdependence is definitely the way forward. And you’re so right, capitalism glorifies independence to such large extents.
We are kicked out of the capitalist machinery when we are chronically ill in ways that can no longer serve its hyperproductivity. So we’d feel lonely anywhere because everyone and everything else is caught up in it.
Exactly! Well said 🌸
Much like when Adam and Eve got kicked out of the garden of Eden! Were we ever really in it in the first place or is it all just made up and now we’re calling it our reality?
Good question!
It’s a mind bending one isn’t it😆
😂
Oof, thank you Madelleine, that definition of loneliness applies, for sure. I also have people in my life who I *could* ask—for company, for practical help—and when I am aware how stretched they are with their own struggles, their immediate family, their demanding work etc. it feels wrong to call on them. Its hard to do collective action when we’re all isolated in our individual struggles, and it seems precious few of us (well or unwell) are truly getting our needs met.
I so feel this! It’s odd, because the people who are most likely to offer me help and company are those who need it the most themselves. And it’s so true, so few of us get our needs met. Capitalism itself causes loneliness.
I didn’t ask for help or approach any of my friends for the exact reason you speak to here Michelle. I was suicidely depressed and knew I had friends who I could reach out but the story I told myself was that they were too busy, had their own lives and family to tend to. (It’s the same story I grew up with and why I didn’t ever go to my mum about anything as a child but I didn’t know that at the time).
Identifying my needs and getting creative about the ways in which I could meet those needs was one of the first set of actions I took at the point of finding myself disabled by the illness I’d kept quiet about for 20 years (in 2018).
It was something I did intuitively at the time and when I spoke up about it I received a great deal of confirmation that such services did not exist - none of the systems had been designed to meet the needs the people had. Irrespective of whether you had paid your taxes for decades or not. Also something I didn’t realise at the time, I found myself having to step outside of the system and find other ways that aligned with what I knew to be true.
This is a fascinating topic - it’s unravelling and helping me process alot.
Hope you are ok Michelle. Thank you for being here 🩵
I did a lot of work on identifying and expressing my needs too. It helped in terms of my family supporting me. And yes, no services that could really help me. It’s scary.
Definitely more services on paper than in real life. Even as lucky to have savings to spend its hard spreading the help I can get out enough, sometimes. Needing a day in bed but the cleaner is coming, and she’s fully booked all other days… having to take appointments late in the afternoon when I’m often a bit zombie like because that’s when I can get seen, etc. And I’m well enough to live on my own (with help).
I’m so lucky to be cared for by my parents — I have so much anxiety about the day they can’t anymore.
Of course! Like I worry what will happen when my money runs out. These are rational fears… though lots of things could happen to negate them 🤞🏻
Let’s hope for the best possible outcome!
I still remember having the balls to ask my neurologist “what support is available to me?”To which he replied “there is none”. - at least I knew and it was brutally honest. I needed honesty.
It got me wondering ‘what is the point in putting myself through this if all I’m going to leave with is another migraine attack?’. I went back one last time having made the changes he advised not to bother making (and some more) and haven’t seen a medical professional for a personalised visit since (though I have been researching the worlds top neurologists online and accessing medical care in a different way, one in which supports my needs).
I’ve woken up feeling worthy today (a first). And I’m so proud of all past versions of me who made up stories to pass the time to her awakening and remembering 💜
Argh, that damn system!
I’ve done a lot of healing around the anger i feel towards it (valid) and the blame I’ve been carrying (disempowering).
It’s helped me to recognise our healthcare system is there to save our lives and treat disease. Something we can truly be thankful for. It is not there to create health - something we can learn to do ourselves. It’s helped a lot.
I still carry a lot of anger towards it…
Thanks for asking, Amber. I’m ok enough. Still have some savings for support services 🙏🏻 so I have oodles of privilege, and its bloody hard. I suspect a lot of poorer people simply die from overwork or neglect.
It’s bloody hard. I’ve been so triggered by brief convos on privilege so many times (whilst honouring the fact I have stacks of it the entire time). Going ever deeper into what’s triggering me - taking me back to a deeper connection with my ancestors at the deepest end. I’ve reached the conclusion that privilege makes what we’re doing possible - in a way that wasn’t accessible to our ancestors and still isn’t possible to a great many a number. But it doesn’t make doing any of this work any easier.
And here’s a timely insta reel:
https://www.instagram.com/reel/DJmZqAaoDOg/?igsh=YXBkZXVnY2Q0andt
Ooh interesting reel! “Totalitarianism becomes possible when we don’t have the internal space to think”
I’ve been feeling so “lonely” but not quite. And your article explained it. It’s the loneliness from being gaslit and ignored from society. People move on. Doctors don’t really care. No one really cares about me except my parents and my partner. I often think of how horrific life will be if my parents weren’t here. If something happens one day and I’m alone I’ll have no one who really loves me. That’s lonely. I am totally disabled and cannot work or function with basic needs from ME and CCI/AAI. Thanks for sharing
I so feel you! I fear for the day my parents aren’t around anymore. I won’t have anyone to care for me properly, nor the daily company.
Very well put! about a state of mind that runs rampant through an unseen world of chronically ill individuals as we navigate an increasingly isolating world.
I don't feel "lonely" either; it's that other, bigger, more complicated thing.
Thanks.
Yup, that other bigger, more complicated thing!
Yes! Not feeling supported by society is huge! The energy used when people simply do not understand what chronic illness means, very much including medical professionals is so frustrating. I find wearing a mask ramps up the lack of understanding too 😥
Love your song x
It really is huge! And thank you 🌸
Well said.
❤️
Feeling unsupported and uncared for is how I’ve grown up my entire life! I did not realise until recent years of course, that this was connected to a wider, global, systemic issue.
Following what happened to me in 2018, I felt cast aside by society. As if slung on to a scrap heap with all the other chronic illness warriors (though I had no idea there were mountains of us at that time).
I came to realise that my greatest need was for support. I came to realise that the greatest travesty throughout all my life was the lack of it - especially emotional support (though of course our finances, physical, mental and spiritual cannot be overlooked either - even though they most are).
I’ve covered a sizeable section on support in my next book. A triangle of support that consists self support, support from others and support from greater purpose/system.
What’s interesting is that when we speak of it, it’s always seen as ‘outside’ of ourselves. Unreachable. Unattainable.
It’s only in the creation of my 2nd book have I realised that I became that support that I so desperately longed for and needed myself. I connected with a greater purpose support network.
Interestingly, only then did it go on to create shifts in my physical reality that later led to me bringing in the support from others. Although a little of it came from our systems (thank you ssp and universal income🙏), much of it came from stepping outside of these systems.
My book is forever evolving and coming to life in even greater ways. It’s new edge is that as it is speaking to all sides of that which hasn’t been spoken to before (not in such depth or all at once anyway), it will be guiding readers to become their own support, their own best friend, their own cheerleader. It will guide from a place of survival (we need to be speaking to this, because to survive all we are is no mean fete) to what comes next and how to rise and thrive - moving beyond existing paradigms and loneliness to the depths you speak of here. Essentially, rewriting our own story.
It’s become clear recently that it’s this that will lead to systemic change. The work we’re doing here, now. It won’t come from the people in power. We must take back our own. In whatever small ways we can.
I so feel this! And yes, it won’t come from people in power but from us building our communities and support systems.
💯
In other news, I can’t stop listening to your song on repeat. I’ve added it to my healing playlist that I play during client treatments and I’ve sent it on to all my friends who I feel will deeply connect 💜
Thank you soooo much, that means a lot! ❤️❤️❤️
Yes! Not feeling supported by society is huge! The energy used when people simply do not understand what chronic illness means, very much including medical professionals is so frustrating. I find wearing a mask ramps up the lack of understanding too 😥
Love your song x