This is a beautiful list of resources and signposts Kate. Thanks for taking the time to gather them all in one place, and thanks for the mention here. In my own 15 year journey to putting an autoimmune disease into functional remission, the single biggest support to me was learning to regulate my nervous system and spend more time in the healing ventral vagal branch of the nervous system. We live in a world of dysregulated nervous systems, and this seems to generate so much depletion and inflammation in our bodies. I wish these self-care skills and practices would be taught to everyone in high school.
Same! I didn’t even realise that’s what I’d spent years learning to do until I discovered my nervous system was (somewhat) regulated the other year! I look forward tp reading a few of your articles now I’ve subscribed.
I concur. I have fibromyalgia which has taught me many, many lessons ~ one of them is to identify when my nervous system has shifted and how to down regulate it as best as possible. Anxiety magnifies the pain so anything I can do to minimize that is worthwhile.
Another lesson is one given to me by a friend with MS ~ she reminds herself that so far she has made it through 100% of the worst days, and she will do so again. The pain always changes, it may seem unrelenting but it always changess even if it's just a degree or two.
This is so great - thanks for sharing Kate. I feel like I've got a library of ailments including a thyroid disorder that have messed with my body and head for years. On top of that, I now have Peri-Menopause to deal with! I was surprised the the grief I've felt over this as I witness my changing body, skin and mind. Both embracing a kind of new found freedom as well as the anxiety that it will trigger yet more physical issues I've managed to get in control over the years. The lack of control scares me sometimes because I do everything 'right'. Exercise, eating and latterly giving up alcohol. Your resources are really helpful and your kind compassionate words. I know I'm not alone now!
This is helpful! I've recently been diagnosed with a chronic illness, Ankylosing spondylitis. It's been super helpful hearing other people's stories and experiences of going through a similar thing. I've even started a blog myself. Writing is such a therapeutic way of coming to terms with everything. I look forward to reading the other resources mentioned in the article ☺️
Subscribed right back! I am fascinated by the journey of others and love to read the most about life lived with chronic illness, how we make sense of the nonsense and learn to navigate our ways around this rough terrain.
It's comforting right? Knowing that there are others out there feeling all the same things that we are. It can get so isolating on the days when you're stuck in bed feeling ill, reading these blogs has been so healing to me 💕 I can't wait to read yours!
Thanks so much for the mention and most of all your helpful article. My husband and I both have chronic illness. My husband was diagnosed with MCTD. It could stay mild, it could affect other areas of his body including heart and lungs. He is an active person and that makes it more of a challenge for him. I remind him that he is not alone and we are in this together
Thank you so much for this beautiful article. It was such a timely read too. I've recently been diagnosed with fibromyalgia and I'm on the journey for self help. I'm researching and doing all that I can for myself. Your note on acceptance and shame and comparison definitely resonates. It's tough going from an active, passionate and driven person to accepting that at times I'm not feeling 'it' and all I want to do is sit glumly staring out the window! Best wishes in your healing journey 🥰
It’s fine to sit glumly and stare out of the window, I’ve been there and will again. Just not all the time. I think support is key, and finding others with similar experiences 🙏🏻
I spent long periods of time sitting near a window staring out at the trees (in 2018). I couldn’t understand why I couldn’t move or do anything. I later went on to see this as much needed and deep healing rest. Giving my body chance to recover, which it eventually did go on to do🙏🦋
You will find a website and YouTube channel with inspiring stories of those who struggle and learn to thrive despite extremely difficult circumstances.
Been living with chronic breathing disease and debilitating nerve damage/pain from cancer surgeries 6.5 years ago. Most doctors gave up, but luckily I found a chronic pain PT, pain psychologist, Rolfing and normal therapy- if it is expensive, exhausting and frustrating but we have learned my biggest issues aside from trauma are self compassion. I talk horribly about myself, and those meditations are the absolute hardest. So simple things I do to help: anti inflammatory diet 80% of the week. Epson baths daily while I listen to a Jon Kabbat-Zin meditation for pain or self compassion, Curable app- brain training, Insight timer free meditations, gratitude journal daily, walk barefoot outside every single day rain or shine, I also ended all relationships that caused me stress or that were toxic to my health including mother, sister and most of family. Another hard part is walking daily even if in a lot of pain and want to curl in bed- as I am unable to move much from my new post cancer body- but I have to do 6000+ steps a day or my body actually feels worse from pain.
I can relate to so much you share here - the trauma, the illness, the way we talk to ourselves, the lack of compassion, the therapy, the self care practices, the ending relationships and daily movement. It’s like reading my own story 😌
I am in the post scan/waiting for results week in my journey with early Stage 4 cancer which is always an anxious time so I found your post really helpful. I will keep repeating the Irish proverb and the Serenity prayer!
I’m glad you found it helpful Miranda, and good luck to you. I can imagine the anticipation must be one of the hardest things. Mindfulness may help with that.
Sending a big hug, Miranda. I care for my Mum, who has cancer. We are VERY familiar with limbo periods between scans and results. I write more about caring for my Dad, but there's so much I want to share with cancer sufferers and their loved ones. I'm following you now & will checkout your articles.
This is another strong article, Kate. Thanks. May I also suggest that opening up to loved ones around you is essential?
When anyone is suffering from a long-term condition or chronic illness, their loved ones are on the journey alongside them, even if they're not suffering the pain and symptoms directly. Loved ones, friends, and family may try to offer care support in some form or other— fear, courage, resilience, and everything in between is happening with each person and also children. I think we all know that children understand, know and see more than we realise. Many young children are caring for parents with long-term chronic conditions. (Carer Trust work in the UK)
Creating space for open discussion without the fear of being shut down is not easy and takes effort from everyone involved. It's a burden not only on the person who's ill but also on all caregivers around them.
When anyone is ill, I'd like to think that there's an informal and formal support 'community or at least team' that makes sure the person who's ill feels seen and is empathetic to their needs emotionally & medically, friends, family, neighbours and healthcare professionals. BUT we know reality isn't there yet, right? I hope, through our articles, we can encourage community support and outreach for those suffering and caregivers.
I am healing from adrenal fatigue and have found, in addition to significant lifestyle changes, that it’s very powerful to talk to my symptoms and ask what messages they have for me. I sometimes feel anxious or depleted, but connecting with the energy of those feelings while understanding my body is trying to protect me, not punish me, has been very powerful and healing.
That is one of my journaling prompts, to ask what your body/pain is saying. And yes great lint - your body is healing and protecting you so we have to listen 🙏🏻
Thank you, Kate for outlining steps to self-care and providing this treasure trove of resources. In my psychiatry practice, I see self-care deficit as the #1 barrier to wellness and wholeness. I've been there myself - no judgment! That is the reason I created Phoenix Soul. I have autoimmune arthritis (stress makes it worse, as stress makes everything worse), & I recommend "Outsmart Your Pain" by Christiane Wolf, an excellent book on mindfulness and coping with chronic illness.
Yes our job is frequently to help people to be able to look after them selves as they should, and stop what hinders.i think you mentioned this book before which I couldn’t find but I’ll add it, thank you!
Do share your experiences, links, tips and recommendations about living with illness or pain. Are you living with an illness, or have you recovered?
This is a beautiful list of resources and signposts Kate. Thanks for taking the time to gather them all in one place, and thanks for the mention here. In my own 15 year journey to putting an autoimmune disease into functional remission, the single biggest support to me was learning to regulate my nervous system and spend more time in the healing ventral vagal branch of the nervous system. We live in a world of dysregulated nervous systems, and this seems to generate so much depletion and inflammation in our bodies. I wish these self-care skills and practices would be taught to everyone in high school.
Thank you so much Vicky, I’d love to learn more about the vagus nerve too 🙏🏻
Me too!
Same! I didn’t even realise that’s what I’d spent years learning to do until I discovered my nervous system was (somewhat) regulated the other year! I look forward tp reading a few of your articles now I’ve subscribed.
Thanks Amber. Nice to 'meet' you 😊
I concur. I have fibromyalgia which has taught me many, many lessons ~ one of them is to identify when my nervous system has shifted and how to down regulate it as best as possible. Anxiety magnifies the pain so anything I can do to minimize that is worthwhile.
Another lesson is one given to me by a friend with MS ~ she reminds herself that so far she has made it through 100% of the worst days, and she will do so again. The pain always changes, it may seem unrelenting but it always changess even if it's just a degree or two.
Yes. Such a good point Susan.
This is so great - thanks for sharing Kate. I feel like I've got a library of ailments including a thyroid disorder that have messed with my body and head for years. On top of that, I now have Peri-Menopause to deal with! I was surprised the the grief I've felt over this as I witness my changing body, skin and mind. Both embracing a kind of new found freedom as well as the anxiety that it will trigger yet more physical issues I've managed to get in control over the years. The lack of control scares me sometimes because I do everything 'right'. Exercise, eating and latterly giving up alcohol. Your resources are really helpful and your kind compassionate words. I know I'm not alone now!
Thanks Georgie, yes it can be hard if doing all the right things, but we can make our lives so lovely despite it all 🙏🏻
Thank you Kate for including my story. I feel very grateful, as I feel raising awareness and understanding of chronic illnesses is really important. 💕
It’s so important Emma. People often suffer in silence or don’t know where to turn and we have to name it all and reach out. 🙏🏻
Absolutely, the brighter the light we shine on chronic illnesses, the more people it reaches 🧡
This is helpful! I've recently been diagnosed with a chronic illness, Ankylosing spondylitis. It's been super helpful hearing other people's stories and experiences of going through a similar thing. I've even started a blog myself. Writing is such a therapeutic way of coming to terms with everything. I look forward to reading the other resources mentioned in the article ☺️
Writing is such good therapy. And Substack is great for finding others with similar experiences 🙏🏻🩵
Subscribed right back! I am fascinated by the journey of others and love to read the most about life lived with chronic illness, how we make sense of the nonsense and learn to navigate our ways around this rough terrain.
It's comforting right? Knowing that there are others out there feeling all the same things that we are. It can get so isolating on the days when you're stuck in bed feeling ill, reading these blogs has been so healing to me 💕 I can't wait to read yours!
Thanks so much for the mention and most of all your helpful article. My husband and I both have chronic illness. My husband was diagnosed with MCTD. It could stay mild, it could affect other areas of his body including heart and lungs. He is an active person and that makes it more of a challenge for him. I remind him that he is not alone and we are in this together
I’m sure you are fortunate to have each others understanding 🙏🏻
We are. It's scary but so is life. There are no guarantees
Thank you so much for this beautiful article. It was such a timely read too. I've recently been diagnosed with fibromyalgia and I'm on the journey for self help. I'm researching and doing all that I can for myself. Your note on acceptance and shame and comparison definitely resonates. It's tough going from an active, passionate and driven person to accepting that at times I'm not feeling 'it' and all I want to do is sit glumly staring out the window! Best wishes in your healing journey 🥰
It’s fine to sit glumly and stare out of the window, I’ve been there and will again. Just not all the time. I think support is key, and finding others with similar experiences 🙏🏻
I spent long periods of time sitting near a window staring out at the trees (in 2018). I couldn’t understand why I couldn’t move or do anything. I later went on to see this as much needed and deep healing rest. Giving my body chance to recover, which it eventually did go on to do🙏🦋
I think so. Sometimes people get depressed to stop them doing more things while the psyche reorganises 🙏🏻
Surprised not to see Kimberly Warner’s work with those who suffer from chronic pain and illness at Unfixed https://open.substack.com/pub/unfixed?r=3p5dh&utm_medium=ios
You will find a website and YouTube channel with inspiring stories of those who struggle and learn to thrive despite extremely difficult circumstances.
Thanks so much, I haven’t come across her so will add her🙏🏻
Here’s the website- https://unfixedmedia.com/
And here’s the YouTube channel - https://youtube.com/@unfixedcommunity?si=SMeaCRZsWG5kQ7sN
Been living with chronic breathing disease and debilitating nerve damage/pain from cancer surgeries 6.5 years ago. Most doctors gave up, but luckily I found a chronic pain PT, pain psychologist, Rolfing and normal therapy- if it is expensive, exhausting and frustrating but we have learned my biggest issues aside from trauma are self compassion. I talk horribly about myself, and those meditations are the absolute hardest. So simple things I do to help: anti inflammatory diet 80% of the week. Epson baths daily while I listen to a Jon Kabbat-Zin meditation for pain or self compassion, Curable app- brain training, Insight timer free meditations, gratitude journal daily, walk barefoot outside every single day rain or shine, I also ended all relationships that caused me stress or that were toxic to my health including mother, sister and most of family. Another hard part is walking daily even if in a lot of pain and want to curl in bed- as I am unable to move much from my new post cancer body- but I have to do 6000+ steps a day or my body actually feels worse from pain.
It sounds like you found lots of great things to support you. Self compassion makes such a big difference! I write about it sometimes. You may also like to practice lovingkindness: https://lettersfromtherapy.substack.com/p/loving-kindness-meditation
Thank you so much, Kate. I look forward to reading this!
And all the ones in the simple tools tab are free 🙏🏻🩵
I can relate to so much you share here - the trauma, the illness, the way we talk to ourselves, the lack of compassion, the therapy, the self care practices, the ending relationships and daily movement. It’s like reading my own story 😌
🤍
Turning shot into fertiliser. Beautiful work. 🙌🏼🌹
*shit 💩 👀😆
I love this analogy David! 💩
I am in the post scan/waiting for results week in my journey with early Stage 4 cancer which is always an anxious time so I found your post really helpful. I will keep repeating the Irish proverb and the Serenity prayer!
I’m glad you found it helpful Miranda, and good luck to you. I can imagine the anticipation must be one of the hardest things. Mindfulness may help with that.
Sending a big hug, Miranda. I care for my Mum, who has cancer. We are VERY familiar with limbo periods between scans and results. I write more about caring for my Dad, but there's so much I want to share with cancer sufferers and their loved ones. I'm following you now & will checkout your articles.
Thank you. I don’t talk much about my cancer on my posts. I will follow your posts as I find it helpful to hear how others deal with this tough time.
Very welcome, Miranda. It's completely understandable why you don't talk about it in your posts. You may want to read this first, to get your bearings around what I write. I hope something resonates and can help.: https://www.carermentor.com/p/who-started-carer-mentor-and-why-cb9?r=a9y7d&utm_campaign=post&utm_medium=web
Lovely resources in this stack, Kate. Thanks for the mention. Much love 💛
Thank you Laia 🙏🏻☺️
This is another strong article, Kate. Thanks. May I also suggest that opening up to loved ones around you is essential?
When anyone is suffering from a long-term condition or chronic illness, their loved ones are on the journey alongside them, even if they're not suffering the pain and symptoms directly. Loved ones, friends, and family may try to offer care support in some form or other— fear, courage, resilience, and everything in between is happening with each person and also children. I think we all know that children understand, know and see more than we realise. Many young children are caring for parents with long-term chronic conditions. (Carer Trust work in the UK)
Creating space for open discussion without the fear of being shut down is not easy and takes effort from everyone involved. It's a burden not only on the person who's ill but also on all caregivers around them.
When anyone is ill, I'd like to think that there's an informal and formal support 'community or at least team' that makes sure the person who's ill feels seen and is empathetic to their needs emotionally & medically, friends, family, neighbours and healthcare professionals. BUT we know reality isn't there yet, right? I hope, through our articles, we can encourage community support and outreach for those suffering and caregivers.
Yes opening up is so essential, thank you Victoria, and support. Your work is so valuable. 🙏🏻
I am healing from adrenal fatigue and have found, in addition to significant lifestyle changes, that it’s very powerful to talk to my symptoms and ask what messages they have for me. I sometimes feel anxious or depleted, but connecting with the energy of those feelings while understanding my body is trying to protect me, not punish me, has been very powerful and healing.
That is one of my journaling prompts, to ask what your body/pain is saying. And yes great lint - your body is healing and protecting you so we have to listen 🙏🏻
That has been one very powerful - game changing - practice for me too🦋
Appreciate you including me and for this great article ❤️
Thanks Hannah, it’s good to build a community around these things 🙏🏻
Absolutely agree and make it empowering and supportive ❤️
Thank you, Kate for outlining steps to self-care and providing this treasure trove of resources. In my psychiatry practice, I see self-care deficit as the #1 barrier to wellness and wholeness. I've been there myself - no judgment! That is the reason I created Phoenix Soul. I have autoimmune arthritis (stress makes it worse, as stress makes everything worse), & I recommend "Outsmart Your Pain" by Christiane Wolf, an excellent book on mindfulness and coping with chronic illness.
Thanks for being you! 🙌
Yes our job is frequently to help people to be able to look after them selves as they should, and stop what hinders.i think you mentioned this book before which I couldn’t find but I’ll add it, thank you!