This is a really beautiful piece of writing, Erika. I'm really looking forward to reading part 2. I feel like there's more to say but I don't know what yet. For now, just thank you for writing and sharing your story.
Erica thank you so SO much for sharing your story. Your words resonate so deeply with me, “My body is an equation no one I approach wants to solve”-this has been my experience over the last four years.
I live with a sudden-onset chronic illness that began four years ago and have yet to find an actual diagnosis or effective treatment. I’ve seen specialist after specialist, but have seldom felt very seen by any of my healthcare providers. The most relief I have found has actually been through therapy which I began a little over a year ago now.
Writing and reading has been such a huge way to connect back to myself over these last four years when I’m not even sure who I am anymore. That quote you shared form “All the Light We Cannot See” rings so true for me. It’s honestly a miracle how we, or anyone living with chronic pain, get up every day try to make meaning in our worlds.
I’m curious to know what practices you’ve found helpful in connecting to yourself and others?
I know for myself, I can easily slip into disassociation when it feels like my own body is no longer a safe place to be. It can also feel pretty isolating trying to manage chaotic symptoms on a daily basis.
I would also love to know which have been your top 5 reads over the last 5 years? 50 books is really impressive! I think it’s beautiful how you’ve chosen to expand your world through reading and your community through sharing your own story. I know it took so much vulnerability and courage to share this part of your experience. It is such a gift and I cannot wait to read the second part of your essay!
Shannon, hi! First: I got to spend time with dear mutual friends of ours this last weekend. I hear you'll be visiting them soon. Have so much fun! 🤗
Thank you for taking the time to write this thoughtful comment. I woke in the middle of the night (hooray insomnia!) and happened to see it and was excited to respond. Just had to wait till my brain did some wakey-wakey first!
So sorry you know the exasperation of undiagnosed, chronic illness. I'm sure it can feel terribly wearisome and lonely at times. It's like we become a "problem manager" without ever applying for the job. And then, somehow, we learn how to create solutions so we can make it through each day. PHEW.
For practices—this is something I'm still trying out! I don't know if these all fall under "practices," but here are things I've done the last several years to help me stay grounded:
Therapy, walks in nature & neighborhoods (wrote a little on that here: https://erikatovi.substack.com/p/16-zip-codes-and-counting), learning to make my needs known/ask for help/say no more, sitting in silence, tending to houseplants, borrowing children's books, opening the blinds or curtains every morning, writing out prayers, sending snail mail, hosting simple game nights, and making my little home an art-filled, colorful, happy one. Those all sound fine and dandy, but some days or weeks I can't make any of that happen. But knowing there's a list I can turn to does help. ❤️
For books—gosh! How to choose?! Top 10 would be easier, but perhaps: Know My Name by Chanel Miller, Being Heumann by Judith Heumann, Becoming by Michelle Obama, And the Mountains Echoed by Khaled Hosseini, and Life of the Beloved by Henri Nouwen. Let me know what some of your favs are!
Erika, thank you for writing this and being so real! I, too, was comforted by finding a (very different) diagnosis. I have had many of the same feelings and some you have had, though our walks are different. Your writing is so comforting and satisfying ... I look forward to each one!
Hi Laura! 👋🏼 It's nice to meet you! I really hoped someone could find solace in this story, so I'm grateful to know my words could bring a little comfort today. Thanks for reading!
Being seen and being listened to are two things worth more than medicine, aren't they?
Such a beautifully-written post, Erika. I'm so sorry for what you've been through, but so pleased that you at last found out what you're dealing with. I can relate to your experience absolutely, and am so grateful to you for telling your story here. I'm already looking forward to the second essay in this series. Hugs! 🤗
They really are like magic for the soul. 😌 Also I’m glad we have writing to lean on to help us process our lives—the hard and happy and all of it in between!
I wish you never had to know this pain, but thank you for showing up so raw and vulnerable each and every day. You are blessing folks so much with your writing and truth-telling (it's clear from the comments so far and the people in your life). I just feel incredibly blessed to know and be friends with the role model, hero, and beautiful human that you are.
GAH! How are you so kind? Thanks for listening to the sneak preview of this around the campfire the other day. I’m way super lucky to have had your support all these years! You’re the best.
Thanks for sharing your experience. Your writing helps create space and show dignity for Christians with chronic illness right where they are at, with or without healing. It's really cool to see you honestly share some of the challenges, nuances, and complexities of what it has been like for you to navigate this. I'm looking forward to reading part 2!
Side Note: This also reminded me of a book called This Too Shall Last by KJ Ramsey.
Hey Elizabeth! I'm sorry for the late response! I appreciate you reading and sharing your thoughts with me. 😊 "This Too Shall Last" is the only book I've read that could capture how this chronic illness journey has felt. I sobbed my way through the first few chapters! KJ is remarkable, isn't she?
Thank you for sharing your experience so openly, bravely, and vulnerably. While I was already not well in my young adulthood, your story mirrors what happened later to me. I also got sick in the summer, after traveling abroad, was bed-bound for two months before recovering briefly, then kept getting worse and worse as time went on. It was Lyme Disease. And at a time when the medical community didn't know much about it and took it lightly. I'm sorry, it must have been so lonely and isolating.
Nadia, it’s nice to meet you. 😌 Thank you for reading through the series and leaving such kind, empathetic comments. I’m so sorry you’ve also experienced the awful guessing game of invisible illness and particularly, the symptoms that come with Lyme disease. Illness can seem like a real thief, can’t it? I’m grateful this isn’t the end of the story, but good gosh it can be hard.
It is lovely to meet you! A thief, you are right on point for saying that. I managed to go into Lyme remission, but it left a bunch of other stuff I still have to work through, not out of the woods yet. I wish you strength and many bright days ahead. 💕
I resonate with so many points of your journey Erika. Chronic Illness is a club that I wish no one else had to be in and yet there's an immediate shared knowledge of the journey. Of being invisible and disbelieved by doctors. Of the "it's so impressive that you are still trying to get better" when we think-What other option do I have? I certainly resonate with the quote you pulled from All the Light We Cannot See: “…it is not bravery; I have no choice. I wake up and live my life. Don’t you do the same?”
It's so interesting to hear how your heart began to wake up my through this experience and that has been true for me as well. Thanks for sharing your story.
Aimee, thank you for reading and taking the time to leave such a thoughtful comment. Chronic illness/pain is so hard and wearisome at times, isn’t it? Somehow, naming and grieving the losses it has brought (and can still bring) has been healing for me.
This is a really beautiful piece of writing, Erika. I'm really looking forward to reading part 2. I feel like there's more to say but I don't know what yet. For now, just thank you for writing and sharing your story.
You're welcome, Veronica! I'm grateful these words meant something to you. Part 2 is currently in the works, so stay tuned! 📻
And thanks for taking the time to read and share this comment. It means a lot.
Erica thank you so SO much for sharing your story. Your words resonate so deeply with me, “My body is an equation no one I approach wants to solve”-this has been my experience over the last four years.
I live with a sudden-onset chronic illness that began four years ago and have yet to find an actual diagnosis or effective treatment. I’ve seen specialist after specialist, but have seldom felt very seen by any of my healthcare providers. The most relief I have found has actually been through therapy which I began a little over a year ago now.
Writing and reading has been such a huge way to connect back to myself over these last four years when I’m not even sure who I am anymore. That quote you shared form “All the Light We Cannot See” rings so true for me. It’s honestly a miracle how we, or anyone living with chronic pain, get up every day try to make meaning in our worlds.
I’m curious to know what practices you’ve found helpful in connecting to yourself and others?
I know for myself, I can easily slip into disassociation when it feels like my own body is no longer a safe place to be. It can also feel pretty isolating trying to manage chaotic symptoms on a daily basis.
I would also love to know which have been your top 5 reads over the last 5 years? 50 books is really impressive! I think it’s beautiful how you’ve chosen to expand your world through reading and your community through sharing your own story. I know it took so much vulnerability and courage to share this part of your experience. It is such a gift and I cannot wait to read the second part of your essay!
Shannon, hi! First: I got to spend time with dear mutual friends of ours this last weekend. I hear you'll be visiting them soon. Have so much fun! 🤗
Thank you for taking the time to write this thoughtful comment. I woke in the middle of the night (hooray insomnia!) and happened to see it and was excited to respond. Just had to wait till my brain did some wakey-wakey first!
So sorry you know the exasperation of undiagnosed, chronic illness. I'm sure it can feel terribly wearisome and lonely at times. It's like we become a "problem manager" without ever applying for the job. And then, somehow, we learn how to create solutions so we can make it through each day. PHEW.
For practices—this is something I'm still trying out! I don't know if these all fall under "practices," but here are things I've done the last several years to help me stay grounded:
Therapy, walks in nature & neighborhoods (wrote a little on that here: https://erikatovi.substack.com/p/16-zip-codes-and-counting), learning to make my needs known/ask for help/say no more, sitting in silence, tending to houseplants, borrowing children's books, opening the blinds or curtains every morning, writing out prayers, sending snail mail, hosting simple game nights, and making my little home an art-filled, colorful, happy one. Those all sound fine and dandy, but some days or weeks I can't make any of that happen. But knowing there's a list I can turn to does help. ❤️
For books—gosh! How to choose?! Top 10 would be easier, but perhaps: Know My Name by Chanel Miller, Being Heumann by Judith Heumann, Becoming by Michelle Obama, And the Mountains Echoed by Khaled Hosseini, and Life of the Beloved by Henri Nouwen. Let me know what some of your favs are!
Thanks again for a seriously lovely comment!
Erika, thank you for writing this and being so real! I, too, was comforted by finding a (very different) diagnosis. I have had many of the same feelings and some you have had, though our walks are different. Your writing is so comforting and satisfying ... I look forward to each one!
Hi Laura! 👋🏼 It's nice to meet you! I really hoped someone could find solace in this story, so I'm grateful to know my words could bring a little comfort today. Thanks for reading!
Being seen and being listened to are two things worth more than medicine, aren't they?
Such a beautifully-written post, Erika. I'm so sorry for what you've been through, but so pleased that you at last found out what you're dealing with. I can relate to your experience absolutely, and am so grateful to you for telling your story here. I'm already looking forward to the second essay in this series. Hugs! 🤗
They really are like magic for the soul. 😌 Also I’m glad we have writing to lean on to help us process our lives—the hard and happy and all of it in between!
I wish you never had to know this pain, but thank you for showing up so raw and vulnerable each and every day. You are blessing folks so much with your writing and truth-telling (it's clear from the comments so far and the people in your life). I just feel incredibly blessed to know and be friends with the role model, hero, and beautiful human that you are.
🥲🥰🥹
GAH! How are you so kind? Thanks for listening to the sneak preview of this around the campfire the other day. I’m way super lucky to have had your support all these years! You’re the best.
Thank YOU for giving us a sneak preview. I felt so honored. Love you so much!
Thanks for sharing your experience. Your writing helps create space and show dignity for Christians with chronic illness right where they are at, with or without healing. It's really cool to see you honestly share some of the challenges, nuances, and complexities of what it has been like for you to navigate this. I'm looking forward to reading part 2!
Side Note: This also reminded me of a book called This Too Shall Last by KJ Ramsey.
Hey Elizabeth! I'm sorry for the late response! I appreciate you reading and sharing your thoughts with me. 😊 "This Too Shall Last" is the only book I've read that could capture how this chronic illness journey has felt. I sobbed my way through the first few chapters! KJ is remarkable, isn't she?
Thank you for sharing your experience so openly, bravely, and vulnerably. While I was already not well in my young adulthood, your story mirrors what happened later to me. I also got sick in the summer, after traveling abroad, was bed-bound for two months before recovering briefly, then kept getting worse and worse as time went on. It was Lyme Disease. And at a time when the medical community didn't know much about it and took it lightly. I'm sorry, it must have been so lonely and isolating.
Nadia, it’s nice to meet you. 😌 Thank you for reading through the series and leaving such kind, empathetic comments. I’m so sorry you’ve also experienced the awful guessing game of invisible illness and particularly, the symptoms that come with Lyme disease. Illness can seem like a real thief, can’t it? I’m grateful this isn’t the end of the story, but good gosh it can be hard.
It is lovely to meet you! A thief, you are right on point for saying that. I managed to go into Lyme remission, but it left a bunch of other stuff I still have to work through, not out of the woods yet. I wish you strength and many bright days ahead. 💕
I resonate with so many points of your journey Erika. Chronic Illness is a club that I wish no one else had to be in and yet there's an immediate shared knowledge of the journey. Of being invisible and disbelieved by doctors. Of the "it's so impressive that you are still trying to get better" when we think-What other option do I have? I certainly resonate with the quote you pulled from All the Light We Cannot See: “…it is not bravery; I have no choice. I wake up and live my life. Don’t you do the same?”
It's so interesting to hear how your heart began to wake up my through this experience and that has been true for me as well. Thanks for sharing your story.
Aimee, thank you for reading and taking the time to leave such a thoughtful comment. Chronic illness/pain is so hard and wearisome at times, isn’t it? Somehow, naming and grieving the losses it has brought (and can still bring) has been healing for me.
With you on the journey… 😌