I have been disabled all but 18 months of my almost 70 years. I ve learnt to listen to the keening, the howling and the deep melancholy, but it took years and years ( 3 children and the belief I was still superwoman didn't help).
It doesn't stop it having a deep impact, but I have accepted it as part of my being, like I have the anxiety of my partner of 50 years. It just is, and needs to be listened to, and acted on accordingly. It isn't meaningless and annoying. Dealing with it is part of taking responsibility for myself, and important in receiving wholeness.
In 2012 I also had a life changing injury which began a year of grief: the death of my beloved mother, my middle adult child developing a brain tumour and my youngest having 2 lots of major surgery for ear tumours. My husband was made redundant and we moved house. There was no time to grieve for any of that, not until 2020, which for us was a time of blessing, allowing us all to work through our losses. Though by then we had lost Chris and my dad, and my dog, and gained 3 grandchildren and a son and daughter in law.
Even now I grieve, though have to work out what for sometimes.
But it isn't as linear and straightforward as you think dear writer. And in reality it is no different to my able bodied partner with whom I speak
frankly. He grieves for the loss of his more able bodied partner, who, although she felt she had flu, had the capacity to give birth to 3 children, get a degree, be a fabulous cook, a creative artist. He grieves his son, and his own shortcomings. I still crave to be useful and creative but am a faint shadow of the woman I would have been. Although I am wiser, more patient and a lot more inclusive than I would have been otherwise.
Thank you so much for your beautiful words and reflections. I see your grief on this page and how you work with it, allow it and let it open your heart. Much love and support to you ❤️
These two sections in particular really stood out and resonated with me: "Hope is not an either or in my experience. I find it’s possible to make space for both hope and acceptance." And,"For me, this is not a linear process — in fact, I don’t see this as a process at all, simply a changing of the seasons. Some seasons are full of anger, some seasons are full of inner peace and other seasons are full of sorrow." I feel so seen, as always. Thank you for this!
"... and so I shouldn’t really be angry, because there are lots of people who are worse off than me."
SO many of us are taught this way of thinking. It's something I've seen especially when it comes to cultures/groups experiencing extreme trauma. My maternal grandfather was a Holocaust survivor and it was pervasive to move forward with the thinking that, "so many other were worse off." It was a way of survival ...
And also it's so powerful to shed that and share your own anger. <3 <3 <3
Wow thank you so much for sharing this!! And it’s so true that it’s a way of survival. My grandmother used to say “Be happy you aren’t disabled” when we would complain about something… it’s not a great thing to say.
This is so important! To allow ourselves to be with our anger and grief without judgement. I try to remind myself that feelings are just feelings and they are normal, however and whenever they show up.
For me, it's not anger so much but overwhelming waves of sorrow and grief. Initially they frightened me. It was another new thing to deal with on top of everything else. Now, while it still unnerves me, I see the waves coming in and I (try as best I can) to just let them come.
I have dealt with and analyzed my anger for many years. It's fascinating cause where there is anger there is always pain underneath (says Eckhart Tolle).
I wanted to share a recent post of mine that helped me a lot with my anger.
I am angry all of the time, it is hard to feel gratitude when you have a chronic illness isn't it, I am not thankful for it at all, thankful for what it has taught me, yes, but would I rather not have learnt those lessons? Perhaps? I find acceptance a little easier, I can see that, manage that, know that it is what it is, and live with it, but I do not like it, at all! Anger comes easier, as does sadness, I sit with both, trying not to let them overwhelm me, but sometimes I need to, just to reach acceptance, but gratitude, that takes time... Thanks for this.
I tried to force gratitude for so many years it was not self-compassionate. I think it needs to come naturally, and for me it’s only during certain periods it comes. And I so agree: I’m definitely in no way thankfully for this illness, I could have learnt whatever I needed to learn in plenty other ways. Thank you for sharing!
I’m back in the anger cycle again, and I know underneath that there is reason, it’s sadness but under that it’s more, and I think it s fear. I’m not sure yet but I gradually thinking that’s what it is. I have a dr insisting on blood tests and face to face talks (though I’ve not actually managed to speak to them yet) and it’s worrying. I have had 15 years of being ignored by the system and now I have a dr engaged (not about ME/CFS sadly) and it feels like hounding. I don’t want many thing else to be wrong, and if I do how do I get them to take the ME seriously alongside. The gaslighting medical trauma is hovering waiting to spill again. So I’m angry, I’m frustrated at being angry. And I need to connect with those deeper feelings but I daren’t.
Excellent post! Yes anger stayed buried for a long time, I also thought I could bypass it! We definitely do have to feel those feelings, it's not fair, and it is ok to feel that!! I think if a lot of people could see what we actually cope with they'd be amazed! Thanks for writing this 💖
Ah it's so different in every period and sometimes every day and I'm for feeling all the feels. But I let my anger out and all of my other emotions as well. I don't hold them in I give them space and let them pass and change to what they are going to next. Right now I'm in a frustrated and yet neutral place.
It's funny because you're talking about gratitude practice and I've been doing positivity practice lately. I'm a realist, I detest toxic positivity. But I just felt like it was something that I needed to add into my meditations right now to pull out the tiny little things that are really actually a lot more neutral than positive they don't look like other people's positivity practice. But that's okay it's mine.
I've been in a battle with the medical field for years now. Decades really. I took a long break because some of my symptoms had calmed down. And now I'm back to where my body is a rigid spastic ttremoring Frozen mess. along with all of the other things that go with my comorbidities. So I fight. I win some things.
And eventually if I don't find peace in the medical field where I feel like I'm cared for I'll give up on them again. But I no longer can totally. Herbalism and holistic medicine will not hold me over fully anymore. So the Battle of how to manage them when I feel like they are killing me this is where I'm at right now.
Thank you so much for this. Weirdly enough, I also just wrote in my own substack about anger and how I'm dealing with it in relation to my chronic illness and dealing with the wider stress of the world. I've talked several times with my therapist about how the anger I am feeling is both mine and not my own. It feels like a heavy amount of it is coming from this collective anger, and that as someone who is disabled and stuck in bed I feel it and notice it more intensely as I don't have the "normal life" distractions of being out and about in the world to look away from it or tune it out. I imagine there are lots of us out there stuck in bed helping hold this anger for ourselves and maybe for the collective too.
Oh I so hear you! Collective anger is definitely something I feel and I think many of us feel. And yes, we can’t just dance it out or let off steam on a run in nature. We need to figure out how to hold it. We really are magnificent ❤️
I've found this really interesting - to think of anger as 'vital'. I've not thought of it that way before. I like how you write about letting out your anger: "I would allow it, go into it, witness it, cherish it, adore it and thank it for being there to show me what I was not OK with". It's such a refreshing perspective, and one I think I'll come back to the next time my anger shows up. Mostly, I am able to accept it, but it's definitely more on the tolerating it side than cherishing it or feeling gratitude for it!
I also appreciate the reminder that it is not linear. Although I do know this, I often forget and am disappointed when my anger or grief comes back. I feel frustrated and tell myself "I thought I'd moved past this!" Acceptance and self compassion are so important, and can lead to deeper gratitude, as you write.
Thank you so much for your reflections! I too get frustrated when old stuff/emotions come back… and yes compassion in that scenario is so important ❤️🌸
I have been disabled all but 18 months of my almost 70 years. I ve learnt to listen to the keening, the howling and the deep melancholy, but it took years and years ( 3 children and the belief I was still superwoman didn't help).
It doesn't stop it having a deep impact, but I have accepted it as part of my being, like I have the anxiety of my partner of 50 years. It just is, and needs to be listened to, and acted on accordingly. It isn't meaningless and annoying. Dealing with it is part of taking responsibility for myself, and important in receiving wholeness.
In 2012 I also had a life changing injury which began a year of grief: the death of my beloved mother, my middle adult child developing a brain tumour and my youngest having 2 lots of major surgery for ear tumours. My husband was made redundant and we moved house. There was no time to grieve for any of that, not until 2020, which for us was a time of blessing, allowing us all to work through our losses. Though by then we had lost Chris and my dad, and my dog, and gained 3 grandchildren and a son and daughter in law.
Even now I grieve, though have to work out what for sometimes.
But it isn't as linear and straightforward as you think dear writer. And in reality it is no different to my able bodied partner with whom I speak
frankly. He grieves for the loss of his more able bodied partner, who, although she felt she had flu, had the capacity to give birth to 3 children, get a degree, be a fabulous cook, a creative artist. He grieves his son, and his own shortcomings. I still crave to be useful and creative but am a faint shadow of the woman I would have been. Although I am wiser, more patient and a lot more inclusive than I would have been otherwise.
Thank you so much for your beautiful words and reflections. I see your grief on this page and how you work with it, allow it and let it open your heart. Much love and support to you ❤️
These two sections in particular really stood out and resonated with me: "Hope is not an either or in my experience. I find it’s possible to make space for both hope and acceptance." And,"For me, this is not a linear process — in fact, I don’t see this as a process at all, simply a changing of the seasons. Some seasons are full of anger, some seasons are full of inner peace and other seasons are full of sorrow." I feel so seen, as always. Thank you for this!
Thank you ❤️🌸
💯
❤️
"... and so I shouldn’t really be angry, because there are lots of people who are worse off than me."
SO many of us are taught this way of thinking. It's something I've seen especially when it comes to cultures/groups experiencing extreme trauma. My maternal grandfather was a Holocaust survivor and it was pervasive to move forward with the thinking that, "so many other were worse off." It was a way of survival ...
And also it's so powerful to shed that and share your own anger. <3 <3 <3
Wow thank you so much for sharing this!! And it’s so true that it’s a way of survival. My grandmother used to say “Be happy you aren’t disabled” when we would complain about something… it’s not a great thing to say.
I can totally see Grandma saying that. Not great at all. Glad we are all learning differently. <3
This is so important! To allow ourselves to be with our anger and grief without judgement. I try to remind myself that feelings are just feelings and they are normal, however and whenever they show up.
Exactly!! It’s hard though…
For me, it's not anger so much but overwhelming waves of sorrow and grief. Initially they frightened me. It was another new thing to deal with on top of everything else. Now, while it still unnerves me, I see the waves coming in and I (try as best I can) to just let them come.
This is beautiful and of course also sorrowful at the same time ❤️🌸
Oh I hear and feel you!
I have dealt with and analyzed my anger for many years. It's fascinating cause where there is anger there is always pain underneath (says Eckhart Tolle).
I wanted to share a recent post of mine that helped me a lot with my anger.
https://mirandavandenheuvel.substack.com/p/angry-anyone
That’s very true! Thank you for sharing ❤️🌸
I am angry all of the time, it is hard to feel gratitude when you have a chronic illness isn't it, I am not thankful for it at all, thankful for what it has taught me, yes, but would I rather not have learnt those lessons? Perhaps? I find acceptance a little easier, I can see that, manage that, know that it is what it is, and live with it, but I do not like it, at all! Anger comes easier, as does sadness, I sit with both, trying not to let them overwhelm me, but sometimes I need to, just to reach acceptance, but gratitude, that takes time... Thanks for this.
I tried to force gratitude for so many years it was not self-compassionate. I think it needs to come naturally, and for me it’s only during certain periods it comes. And I so agree: I’m definitely in no way thankfully for this illness, I could have learnt whatever I needed to learn in plenty other ways. Thank you for sharing!
I’m back in the anger cycle again, and I know underneath that there is reason, it’s sadness but under that it’s more, and I think it s fear. I’m not sure yet but I gradually thinking that’s what it is. I have a dr insisting on blood tests and face to face talks (though I’ve not actually managed to speak to them yet) and it’s worrying. I have had 15 years of being ignored by the system and now I have a dr engaged (not about ME/CFS sadly) and it feels like hounding. I don’t want many thing else to be wrong, and if I do how do I get them to take the ME seriously alongside. The gaslighting medical trauma is hovering waiting to spill again. So I’m angry, I’m frustrated at being angry. And I need to connect with those deeper feelings but I daren’t.
Oh wow, I’m so sorry you’re going through all this. I so understand the anger and frustration and everything going on underneath it.
❤️
❤️
Excellent post! Yes anger stayed buried for a long time, I also thought I could bypass it! We definitely do have to feel those feelings, it's not fair, and it is ok to feel that!! I think if a lot of people could see what we actually cope with they'd be amazed! Thanks for writing this 💖
Thank you! And yes, it would be incredible if other people saw what we deal with!
We are amazing!!! ❤️
This was really helpful thank you for writing it.
You’re so welcome ❤️🌸
Ah it's so different in every period and sometimes every day and I'm for feeling all the feels. But I let my anger out and all of my other emotions as well. I don't hold them in I give them space and let them pass and change to what they are going to next. Right now I'm in a frustrated and yet neutral place.
It's funny because you're talking about gratitude practice and I've been doing positivity practice lately. I'm a realist, I detest toxic positivity. But I just felt like it was something that I needed to add into my meditations right now to pull out the tiny little things that are really actually a lot more neutral than positive they don't look like other people's positivity practice. But that's okay it's mine.
I've been in a battle with the medical field for years now. Decades really. I took a long break because some of my symptoms had calmed down. And now I'm back to where my body is a rigid spastic ttremoring Frozen mess. along with all of the other things that go with my comorbidities. So I fight. I win some things.
And eventually if I don't find peace in the medical field where I feel like I'm cared for I'll give up on them again. But I no longer can totally. Herbalism and holistic medicine will not hold me over fully anymore. So the Battle of how to manage them when I feel like they are killing me this is where I'm at right now.
And as the US turns it only gets worse.
Oh I like the idea of neutral gratitude practices! I’m going to borrow that ❤️🌸 Thank you for sharing.
Thank you so much for this. Weirdly enough, I also just wrote in my own substack about anger and how I'm dealing with it in relation to my chronic illness and dealing with the wider stress of the world. I've talked several times with my therapist about how the anger I am feeling is both mine and not my own. It feels like a heavy amount of it is coming from this collective anger, and that as someone who is disabled and stuck in bed I feel it and notice it more intensely as I don't have the "normal life" distractions of being out and about in the world to look away from it or tune it out. I imagine there are lots of us out there stuck in bed helping hold this anger for ourselves and maybe for the collective too.
Oh I so hear you! Collective anger is definitely something I feel and I think many of us feel. And yes, we can’t just dance it out or let off steam on a run in nature. We need to figure out how to hold it. We really are magnificent ❤️
Such a great post. I felt every word to my core! I have been mostly home bound for 12 years and anger is definitely one of my most prevalent emotions.
There’s a lot to be angry about! ❤️
I've found this really interesting - to think of anger as 'vital'. I've not thought of it that way before. I like how you write about letting out your anger: "I would allow it, go into it, witness it, cherish it, adore it and thank it for being there to show me what I was not OK with". It's such a refreshing perspective, and one I think I'll come back to the next time my anger shows up. Mostly, I am able to accept it, but it's definitely more on the tolerating it side than cherishing it or feeling gratitude for it!
I also appreciate the reminder that it is not linear. Although I do know this, I often forget and am disappointed when my anger or grief comes back. I feel frustrated and tell myself "I thought I'd moved past this!" Acceptance and self compassion are so important, and can lead to deeper gratitude, as you write.
Thank you so much for your reflections! I too get frustrated when old stuff/emotions come back… and yes compassion in that scenario is so important ❤️🌸