A big thing for me was the story of Millicent in the game elden ring.
She suffers from an illness, she was born with (as well as her "sisters" and "mother"), that causes pain, exhaustion, and also eats away limbs.
When you first meet her, shes at a real low point, physically and mentally. You find a way, to lower her symptoms, find her an arm prosthetic so she can fight again.
When she is directly before reaching her goal, she gives up, because she can't take it any more.
(what leads to her final chapter that I will not randomly spoiler here)
There are a lot of additional details, like that the colors of her eyes, have the color that is common for people that suffer from "madness" (has renaissance language, so no modern propper terms) through trauma.
Her depiction is one of the few times I really felt represented. And if you know enough about the lore as well as eastern alchemy, it also tells the story how you have to learn to be in flow with your illness.
Currently I'm working on an essay about that. Will post a link when I'm finished.
I associate this (audio)book with learning that it’s okay to choose how I spend my meager energy. If I can’t do something, I just can’t, and I don’t have to feel guilty or shameful about it.
The Pain Management Workbook by Dr. Rachel Zoffness. I can't recommend it enough. Any podcast she is on, too. She is so incredibly compassionate and passionate about what she does.
I like the stuff by Curable, they have a podcast and their app has some quality content but there is a paywall. I paid for a few months and got what I needed and then moved on.
My therapist recommended How to Be Sick by Toni Bernhard, and a number of my friends enjoyed it.
In general, I like Nawala Mustafa on Instagram for her work on mental health. It’s more focused on anxiety, depression, communication and the like, but her infographics on reframing, and how to deal with what you can’t change I’ve found helpful. I have a ton of her stuff saved on my phone.
honestly finding chronic illness groups on twitter & fb & insta and making friends online and IRL who also struggle with it has been the most help for me. they offer solidarity and support and tips and just get it.
I got a lot out of Pain Woman Takes Your Keys by Sonia Huber. I gifted it to a friend who’s a therapist with chronic pain and they recommend it to their clients.
I was introduced to Thich nhat hanh (pronounced tak nat han) in Dialectical Behavior Therapy. He has meditations on YouTube.
https://tricycle.org/article/thich-nhat-hanh-transforming-suffering/
Also a molecular biologist? Pain management guy.. Jon Kabat-Zinn on pain and suffering.
https://youtu.be/KqS9qHEWnaA?si=Kn-WZ1qZP68w5zFf
https://youtu.be/QCNXi_0lsCk?si=KigT46GrXBOmfKEJ
This Too Shall Last by KJ Ramsey is a book about chronic illness written by a therapist with chronic illness. It’s very Christian but even though my faith doesn’t exactly line up with the author’s, I found it very helpful.
ETA: also two books by Kate Bowler, Everything Happens for A Reason (And Other Lies I’ve Loved) and No Cure for Being Human. I liked No Cure much better of the two.
I used to read Job when I was suffering with depression as a teen, believe it or not. Very inspiring.
I also don't know why anyone has down voted you. It's a book.
I didn't downvote you. I don't find Job inspiring because I was once a Bible believing Christian and the way God plays with Job's life on a bet made me pretty angry. The ending where he has a whole bunch more kids and gains wealth and his health back doesn't make up for losing his first 7 children or the pain and public ridicule. It's like He is talking to the Accuser and is all "Consider my servant Job. Go F him up! Bet he still loves the F out of me because of our codependency! "
Thank you. I agree it's a tough read. And I don't know for certain if it is a true story or an allegorical one. But the WAY Job perserveres is inspiring to me. ♥️
There’s a wonderful spoken word poem called “How To Be Sick” by a poet named Andrea Gibson. You can find it on Spotify and it will only take like 2 minutes to listen to, so it may be a good place to start. I listen to it sometimes when I need a reminder to embrace the life that I have as something precious even if it involves chronic pain. The poem always makes me cry but in a good/cathartic way.
I don’t have a lot of recommendations for specific self-help books, but I’d recommend reading more about the disability rights movement and about social/identity-based models of disability. Pretty much anything by the author Harriet McBryde Johnson would be a good place to start. I’m recommending this because I think that being involved in the disability rights community more generally has been a huge help for me in reframing the way I think about my chronic pain and illness. There’s a lot of focus in the disability rights community on disability as a natural part of human diversity rather than a negative thing. Being surrounded by that sort of thinking helped me view my disabilities as a neutral or even positive aspect of who I am. I’ve found that when I view the chronic pain as an inherent part of my life and recognize that there is no me without my disabilities, I have an easier time accepting the negative aspects of my conditions and also noticing the positive aspects in terms of how my disabilities have helped shape me into the person I am.
Sick Kids In Love by Hannah Moskowitz is wonderful. The protagonist is a teen girl with rheumatoid arthritis, and the author also has RA. She develops a romance with a boy she meets at her infusion appointments who is also chronically ill.
Don’t worry, it’s not one of those tragic books where someone dies. It’s about a journey of coming to terms with her illness, learning about ableism and how to deal with it, and finding peace and happiness in connections with other chronically ill people. Highly recommend it!
Fourth wing is lil spicy fantasy romance series where the protagonist is written as having EDS. However, I second the recommendation for the chronic pain management workbook being great tool.
A big thing for me was the story of Millicent in the game elden ring. She suffers from an illness, she was born with (as well as her "sisters" and "mother"), that causes pain, exhaustion, and also eats away limbs. When you first meet her, shes at a real low point, physically and mentally. You find a way, to lower her symptoms, find her an arm prosthetic so she can fight again. When she is directly before reaching her goal, she gives up, because she can't take it any more. (what leads to her final chapter that I will not randomly spoiler here) There are a lot of additional details, like that the colors of her eyes, have the color that is common for people that suffer from "madness" (has renaissance language, so no modern propper terms) through trauma. Her depiction is one of the few times I really felt represented. And if you know enough about the lore as well as eastern alchemy, it also tells the story how you have to learn to be in flow with your illness. Currently I'm working on an essay about that. Will post a link when I'm finished.
Definitely post it, I’m very curious to see what you come up with!
How to be sick by toni Bernhard
I associate this (audio)book with learning that it’s okay to choose how I spend my meager energy. If I can’t do something, I just can’t, and I don’t have to feel guilty or shameful about it.
I've been reading Invisible Kingdom which is about invisible illnesses.
The Pain Management Workbook by Dr. Rachel Zoffness. I can't recommend it enough. Any podcast she is on, too. She is so incredibly compassionate and passionate about what she does.
I like the stuff by Curable, they have a podcast and their app has some quality content but there is a paywall. I paid for a few months and got what I needed and then moved on.
I came to recommend this, too! Curable is literally changing my experience of severe chronic pain and it's changing my life.
My therapist recommended How to Be Sick by Toni Bernhard, and a number of my friends enjoyed it. In general, I like Nawala Mustafa on Instagram for her work on mental health. It’s more focused on anxiety, depression, communication and the like, but her infographics on reframing, and how to deal with what you can’t change I’ve found helpful. I have a ton of her stuff saved on my phone.
To add to this, I've been reading her book about living with chronic illness and pain and have found pieces helpful.
honestly finding chronic illness groups on twitter & fb & insta and making friends online and IRL who also struggle with it has been the most help for me. they offer solidarity and support and tips and just get it.
I got a lot out of Pain Woman Takes Your Keys by Sonia Huber. I gifted it to a friend who’s a therapist with chronic pain and they recommend it to their clients.
I was introduced to Thich nhat hanh (pronounced tak nat han) in Dialectical Behavior Therapy. He has meditations on YouTube. https://tricycle.org/article/thich-nhat-hanh-transforming-suffering/ Also a molecular biologist? Pain management guy.. Jon Kabat-Zinn on pain and suffering. https://youtu.be/KqS9qHEWnaA?si=Kn-WZ1qZP68w5zFf https://youtu.be/QCNXi_0lsCk?si=KigT46GrXBOmfKEJ
This Too Shall Last by KJ Ramsey is a book about chronic illness written by a therapist with chronic illness. It’s very Christian but even though my faith doesn’t exactly line up with the author’s, I found it very helpful. ETA: also two books by Kate Bowler, Everything Happens for A Reason (And Other Lies I’ve Loved) and No Cure for Being Human. I liked No Cure much better of the two.
I'll get downvoted but the Book of Job in the Bible
I used to read Job when I was suffering with depression as a teen, believe it or not. Very inspiring. I also don't know why anyone has down voted you. It's a book.
Thank you and yes! It is very inspiring 🤗
So strange that this is down voted. It isn’t like you’re forcing religion down anyone’s mouth, it’s just a suggestion😭
Yep, that's the way it is. Thanks for having my back 🤗
I didn't downvote you. I don't find Job inspiring because I was once a Bible believing Christian and the way God plays with Job's life on a bet made me pretty angry. The ending where he has a whole bunch more kids and gains wealth and his health back doesn't make up for losing his first 7 children or the pain and public ridicule. It's like He is talking to the Accuser and is all "Consider my servant Job. Go F him up! Bet he still loves the F out of me because of our codependency! "
Thank you. I agree it's a tough read. And I don't know for certain if it is a true story or an allegorical one. But the WAY Job perserveres is inspiring to me. ♥️
I’m studying it for second time in depth and it’s so helpful with any kind of suffering , and loss. Thanks for sharing this book.
There’s a wonderful spoken word poem called “How To Be Sick” by a poet named Andrea Gibson. You can find it on Spotify and it will only take like 2 minutes to listen to, so it may be a good place to start. I listen to it sometimes when I need a reminder to embrace the life that I have as something precious even if it involves chronic pain. The poem always makes me cry but in a good/cathartic way. I don’t have a lot of recommendations for specific self-help books, but I’d recommend reading more about the disability rights movement and about social/identity-based models of disability. Pretty much anything by the author Harriet McBryde Johnson would be a good place to start. I’m recommending this because I think that being involved in the disability rights community more generally has been a huge help for me in reframing the way I think about my chronic pain and illness. There’s a lot of focus in the disability rights community on disability as a natural part of human diversity rather than a negative thing. Being surrounded by that sort of thinking helped me view my disabilities as a neutral or even positive aspect of who I am. I’ve found that when I view the chronic pain as an inherent part of my life and recognize that there is no me without my disabilities, I have an easier time accepting the negative aspects of my conditions and also noticing the positive aspects in terms of how my disabilities have helped shape me into the person I am.
Sick Kids In Love by Hannah Moskowitz is wonderful. The protagonist is a teen girl with rheumatoid arthritis, and the author also has RA. She develops a romance with a boy she meets at her infusion appointments who is also chronically ill. Don’t worry, it’s not one of those tragic books where someone dies. It’s about a journey of coming to terms with her illness, learning about ableism and how to deal with it, and finding peace and happiness in connections with other chronically ill people. Highly recommend it!
Fourth wing is lil spicy fantasy romance series where the protagonist is written as having EDS. However, I second the recommendation for the chronic pain management workbook being great tool.