Love this! I was just talking about hope recently how I can’t hope too much because I can’t handle it if things don’t go the way I want. The longer my illness wore on, the more I started to dislike the word hope. It’s like wishing for something that is unattainable. I don’t know what a good word replacement would be for me, but I’ve come to focus on the present and not even think about hope at all. I know deep down I still hope for things, but this is just easier for me mentally.
It sounds like we have been on a similar journey. Creating my own definition/relationship to hope has been interesting and fruitful as I wrote about here!
Really interesting framing of hope. I think hope can become addictive in the sense that we start denying the issues right in front of us and not addressing them, but I think this is different in cases where the problems in front of us are out of our hands, such as when dealing with a chronic illness that we can't just cure if we try hard enough. Anyways, I really like that idea of staying in the middle when it comes to finding the right level of hope.
Thanks, Zoe. You state exactly my conundrum, where does hope play in to something that hasn't changed? Releasing hope, feels like releasing expectations in some way
I love this so much. And your description of hope being a balance between positivity and groundedness.
Because, for me, hope is not about telling myself that everything will always work out in my favour, that's not realistic. It's about knowing, from my past experience that even when things are hard, painful and a struggle, I will get through them, regardless.
I’m curious as to our relationship with hope and love to hear other writers experiences - especially when living with chronic illness.
One of my friends says she falls in and out of love with hope all the time.
For me, it felt like that at one time all I had was hope. It was only when I looked back I realised I had so much more than hope. I’ve come to learn that hope is a healing path. I made a concious decision to choose this path. Understanding that it would be just as treacherous and uphill all the way as any other path. So I’m not sure if that made a difference?
I stayed true to hope all these years. My hope and belief that I could get well (even if I didn’t) never strayed. But I can appreciate to the point that it could look utterly naive to others. I’m ok with that.
Your writing reminded me of a poem I wrote over a year ago, thanks for that reminder:
I ended up in a circle at the last minute last night and was sharing about your post when we reflected on the word hope! A song was played at the end called Hope and I literally left the circle FULL of Hope. Realising that u had become disconnected with it recently. So thank you for being part of that journey 💝
Thank you for this. "Hope as addiction" reminds me of Lauren Berlant's term "cruel optimism," an idea I've always loved yet weirdly never thought about in the context of chronic illness - the one subject I think about every hour of every day... So again, thanks! for all of your writing really.
I think hope is an addiction we’re afraid to quit. What lies of the other side of it? Is it nothing or is it blind unwavering self belief? To me, hope is like a flame, sometimes small, sometimes blisteringly bright, oftentimes almost extinguished but always there, ever persistent (somehow) :)
This is so great and you delve into this so beautifully. Absolutely agree, hope does feel like self-compassion. People can get very addicted to the idea of hope and that can feel troubling.
Love this! I was just talking about hope recently how I can’t hope too much because I can’t handle it if things don’t go the way I want. The longer my illness wore on, the more I started to dislike the word hope. It’s like wishing for something that is unattainable. I don’t know what a good word replacement would be for me, but I’ve come to focus on the present and not even think about hope at all. I know deep down I still hope for things, but this is just easier for me mentally.
It sounds like we have been on a similar journey. Creating my own definition/relationship to hope has been interesting and fruitful as I wrote about here!
Indeed! Def feel I’ve experienced a similar struggle. You captured that conflict perfectly!
I have thought a lot about hope after acquiring myalgic encephalomyelitis 35 years ago.
For me hope became dangerous when my hopes for returning to normal life were repeatedly dashed leaving me psychologically vulnerable.
I realized I was putting my hope in the wrong people. Knowledge about my disease renewed my hope.
I have seen too many suicides of people with ME because people who pushed "cures" onto ME patients didn't know what they were doing.
Because of the lack of education about this disease, there are a lot of snake oil salesman peddling hope.
I think the most resilient hope comes from knowledge.
Really interesting framing of hope. I think hope can become addictive in the sense that we start denying the issues right in front of us and not addressing them, but I think this is different in cases where the problems in front of us are out of our hands, such as when dealing with a chronic illness that we can't just cure if we try hard enough. Anyways, I really like that idea of staying in the middle when it comes to finding the right level of hope.
Thanks, Zoe. You state exactly my conundrum, where does hope play in to something that hasn't changed? Releasing hope, feels like releasing expectations in some way
This a powerful piece
I find my own “auto de fé” process with HOPE is the pro formative act of “playing Pollyanna & the Glad Game”
It works more often then it fails BUT it masks the lack of EVERYTHING
https://en.m.wikipedia.org/wiki/Spanish_Inquisition
Thank you, Rudi. I do believe that sometimes for some people hope is a mask and a game as you mentioned
I love this so much. And your description of hope being a balance between positivity and groundedness.
Because, for me, hope is not about telling myself that everything will always work out in my favour, that's not realistic. It's about knowing, from my past experience that even when things are hard, painful and a struggle, I will get through them, regardless.
I love this definition of hope, and connecting it to self-trust. Thank you for sharing, Lulu
I’m curious as to our relationship with hope and love to hear other writers experiences - especially when living with chronic illness.
One of my friends says she falls in and out of love with hope all the time.
For me, it felt like that at one time all I had was hope. It was only when I looked back I realised I had so much more than hope. I’ve come to learn that hope is a healing path. I made a concious decision to choose this path. Understanding that it would be just as treacherous and uphill all the way as any other path. So I’m not sure if that made a difference?
I stayed true to hope all these years. My hope and belief that I could get well (even if I didn’t) never strayed. But I can appreciate to the point that it could look utterly naive to others. I’m ok with that.
Your writing reminded me of a poem I wrote over a year ago, thanks for that reminder:
https://open.substack.com/pub/warriorwithin/p/on-meeting-hope
I’m glad that you’ve found a way to hope that feels good for you. It was helpful for me to read <3
I ended up in a circle at the last minute last night and was sharing about your post when we reflected on the word hope! A song was played at the end called Hope and I literally left the circle FULL of Hope. Realising that u had become disconnected with it recently. So thank you for being part of that journey 💝
Thank you for this. "Hope as addiction" reminds me of Lauren Berlant's term "cruel optimism," an idea I've always loved yet weirdly never thought about in the context of chronic illness - the one subject I think about every hour of every day... So again, thanks! for all of your writing really.
Thanks for that reference! There are definitely parallels. And thank you for the kind words as well :)
I think hope is an addiction we’re afraid to quit. What lies of the other side of it? Is it nothing or is it blind unwavering self belief? To me, hope is like a flame, sometimes small, sometimes blisteringly bright, oftentimes almost extinguished but always there, ever persistent (somehow) :)
This is so great and you delve into this so beautifully. Absolutely agree, hope does feel like self-compassion. People can get very addicted to the idea of hope and that can feel troubling.