Rae - ever grateful for our time together and you weaving my story into your space. I’m in floods of tears re- reading it published in the world. I want folks to know they can reach out to David or I if they’d like, ask questions, learn more, connect. It would be my honour. ✨🙏
Thank you so much for sharing all your hard-won wisdom, as well as all the areas of uncertainty and doubt that have existed and still exist. Everything in here is so real, and I can already see that this is a real gift to a lot of people. Thank you Claire!
Claire, what a gift to read your words and experience today. I’m so sorry for what your family has walked through and how the medical system failed to help/advocate along the way.
I would be so grateful for the chance to ask questions and connect on the topic of long COVID as I look for some answers myself.
Claire, so sorry to read about your struggles during that period. And to observe the process of how health care staff treated your case is shocking but not unfamiliar. We simply don't have all the answers or enough information to cover long covid issues.
Great article 👏 happy to read about real testimonials that tell real truths.
No and do you know who was supportive? The chronic illness community - it took me a while to find them but when I did they were so welcoming. I don’t use twitter now as it served its purpose and I left the LC fb groups as there were too many suicides and my heart just broke for them. It’s been a very dividing time but I am grateful for my own resilience and my creative ways of getting through...
Yeah exactly this. We should discuss this sometime offline. There's more support being offered on local community levels benchmarked with same qualities from other pockets of the world. The findings are podcast worthy content and I'm happy to supply a crowd of listeners for a webinar if I can get my sh*t together 🥴
So many testimonies now coming to surface of long covid symptoms, meanwhile cases are back up and new vaccines are being rolled out. We need to be discussing back stories and sharing best practices as it seems the health care community is just as burned out as the rest of us. I'm tired of answers that end with no solutions but waiting periods to offer.
Okay, rant over. Back to positive sunny affirmations. 🌞 #omshanti
The CI community is amazing. I have a CFS/ME group as well as being part of a CI Facebook group, and it is so reassuring to have a community on hand. You are not alone Claire x
Ok this is interesting... ill maybe look them up - I’m nervous to step back into those spaces as they made me quite unwell... because I was ever searching for hope and there wasn’t any! I’d like to be of service though so maybe that’s a better fit!
The FB one I’m in is CISFA and although I don’t spend a lot of time there it appears to be wholly positive and supportive. The other is a WhatsApp group of people I met during treatment 💕
I totally understand your nervousness, there are also quite a few groups I’ve had to come out of - the main thing is to look after yourself 💕💕💕
Accepting what is and surrendering (in a good way). It saved me. Sounds like it saved your family too. Thank-you for sharing your story and Rae for this series. I agree, it's important to share and bare witness.
I get it now. And am very grateful for it. But, not so much at the time. The pain was immense and I wasn't sure how I was going to make it through. Now, I wouldn't have had it any other way. Well, maybe a bit less bumpy, but I don't think I would've listened. The universe literally had to take me out, so I could be put back in. (If that makes sense?)
I am also flipping off "the rules" and "the rulemakers" as I work at carving out a life of my own through the lens of Long Covid. Though there are times when I'm tempted to submit to the pressure of Conforming, all I need to do is play the tape forward a little and see myself bedbound for weeks on end to say, "Nope!"
In a way, Long Covid has been my Get Out of Jail ticket to focus on living the life *I* want to live and starting to walk *my* path. There's still the matter of allotting my energy appropriately, but I am finding things are flowing more easily the further along I go. Slow and Steady does lead to Victory.
That's such a beautiful sentiment, and while I wish it were easier to walk our own paths WITHOUT a hardship like long COVID forcing us to do so, I agree that it is definitely one of the gifts that comes with unexpected changes to physical and mental capabilities.
“Even if we're living a life that nobody else understands, and even if society at large doesn't make space for it, it’s still our life, isn't it? It's not anybody else's life, it’s ours.” ❤️❤️
My story is very different by my husband was diagnosed with a chronic illness just before COVID started and we have two young kids (and homeschool due to COVID high risk). I think part of the process you described going through without using these words, and one I’ve been working through, is just grieving the life we used to/were supposed to have before we can accept and move on to what it is now. Being very stubborn about carving out a few times a day just for me is my only advice for the caregiver. I do some sort of movement/exercise each morning (bad hip since having kids) and I focus on rest or creativity after the kids are asleep. We don’t have social clubs or events or busy calendars in the traditional sense but our days our still busy and keeping my nights and weekend emptier helps me stay balanced.
I really relate to this - keeping nights and weekends empty is also a huge cornerstone of my health strategy, but it is so hard not to feel obligated, or feel FOMO, and to try and feel normal and vital when you are bucking the social expectations in this way. I still am in a phase where I ignore my needs and make too many plans and pay for it.
Rae and Claire thank you so much for sharing this insightful, powerful interview.
Shedding light on how chronic illness really looks and the pitfalls of our medical system are the only way change can occur.
I have worked in healthcare for decades and witnessed countless patients suffer and feel invisible. Many of their symptoms are out of my wheelhouse as a neuro-musculoskeletal practitioner (I’m a chiropractor), so while I may not be able to always help their physical body I CAN always listen and bear witness.
I try very hard to be fully present with them and am constantly amazed when folks tell me this is the only place they feel heard. I hope, in some small way, it helps their health.
May you move forward to a time of improved energy, less pain and frustration. I truly cannot imagine going through all of that, you are a complete and total rock star of a human Claire. You too Rae, as I know you’ve travelled your own rough road and I appreciate you both sharing the way you have. It helps many people.
Listening and bearing witness really is SUCH an important role to play! During my first experience with chronic pain, after a failed surgery and seeing tons of doctors very briefly, I saw an acupuncturist whose appointments were 1.5 hours long. Even more than the acupuncture, the long appointment and her time was healing in itself.
Donna! Thank you so so much for sharing that. Yes feeling heard is a huge part of it - that’s why I came to Substack to hear myself and my thoughts away from no one caring!
Thank you Rae and Claire for sharing Claire’s story. Through the worst moments of my own lockdowns and illness ‘journey’ I have had moments of gratitude that I have not been responsible for keeping small humans alive at the very same time. I’m glad Dave is doing better at the moment and I hope its sustained for him, for you & for your family. Here’s to moving the dial on culture through gentle activism, you are definitely an Armchair Rebel 🙏🏻
What’s missing from the Long COVID story is what losses the partners and caregivers have to grieve alongside their sick loved one. There was no rule book for this, given how novel the virus and the long-tail version were/are. By comparison, there are tons of resources out there for families/caregivers dealing with cancer grief.
This conversation was huge in this respect. Claire, your responses to your husband, to life, and to that school teacher - with a newborn strapped to your chest - were so incredibly human and real.
Rae, thank you for your incisive questions and comments here. You steer these conversations beautifully. Claire, thank you for letting us into this incredibly difficult part of your life story 💛
Thank you Rae for sharing Claire’s story. My eyes are full of tears trying to type but Claire, know that you are seen and you are held and you are loved. Hugs to you and your sweet family 💗
Thank you! I see you and appreciate that so so deeply. It’s meant so much to me to go on this journey of writer-y hope and be able to be honest at the same time... ✨🙏
I’m sat here wide-eyed and rocking. I woke up in panic as I often do after my visit to intensive care. My beautiful kittlets were wowing for food. I lost it. Went downstairs and started throwing cat treats everywhere and freaking out about how I couldn’t do this, whilst hubby stood and stared at this new odd turn of things. I mean wtf could he do accept hug me when eventual collapse happened, which he naturally did. I feel like I’m so close to loosing ‘it’ all the time, whatever it is. Reading this interview has helped so much. I really need to.....actually not sure what but surrendering sounds way better than my trying to control everything 💜
The messages of acceptance, surrender, and what a gift that can be to ourselves/our loved ones shines through in your story, Claire. There’s a balance, always. And, it sounds like you and Dave found it together. (I was also cheering when you booked the trip!) Thank you for sharing, Claire and Rae ✨
I feel like this is one of those 'stars aligning' moments Claire and Rae. I saw this in 'notes' which I don't often get a chance to look at, and I was so struck by it - particularly as you discussed how it was as hard to revisit this today as it was when you first wrote about it. I know those feelings so intimately. Today I published my most personal post ever here on substack on the subject of my chronic and overlapping complex health conditions. Within five minutes I had a voice message saying 'thank you so much for being someone that has made me feel less alone'. This is what I want to say right back to you. I'm so sorry for your experience, and I have so much to say - it's probably best summed up in my post!! https://open.substack.com/pub/emmasimpsonauthor/p/whose-body-is-it-anyway?utm_campaign=post&utm_medium=web @Rae I will be in contact - I would love to be able to contribute to your library. This is wonderful, thank you both for your honest, openness and bravery. This is where we stand up and we matter.
Thanks to Claire for sharing this story and Rae for the space to make it happen. These stories really help us all who have gone through confusing medical stuff, dismissive doctors, and realizing that we need to change how we relate to society even if society doesn't make that easy if we're going to live healthy lives.
I noticed immediately the part where Claire's doctor mentioned she might be going into menopause because I am certain that a lot of stuff I've been complaining about that my doctor just wants to give me pills for is related to perimenopause to which my own doctor (at a women's clinic in the Bay Area no less) said, "could be but really unlikely because you're way too young." I'm 43. But even if I was 23, the total dismissive experience was deflating.
So much more to say ... this is a whole whole lot on one family's plate at one time so I think what I want to say is that I'm glad Claire and Dave seem to be figuring out moving forward together through your similarities and differences and all of the challenges and that I'm inspired by the changes you've made to life that you share here on Substack. <3 <3 <3
My doctor said we start to see symptoms of peri menopause from age 35! Stress has such an impact on hormones - my periods are still shorter than I’d like in between. Thanks for your support Kathryn!!
This was heart-wrenching to read and also seeing how the experience has shaped Claire into taking up the space she needed in her life is so beautiful. Thank you for sharing her story.
This is what responsibility is truly about. Being the person that knows that things will change if you do something about it.
Having that courage when doctors just give up and treat people like tech support “sorry you are out of warranty” and finding out that only those who are suffering are the ones brave enough to talk about it and do something about it just tells us that society had given up hope.
“Just rest” is great advice, and I would also add a sprinkle of joy into everyones day.
During the lockdowns the only way I managed to finish my day after caring for someone was to watch Shaun of the Sheep, Ratatouille and so. That moment of silly joy was the one that kept giving me the opportunity to rest for a bit and wake up knowing we needed to keep building our day to day.
Rae - ever grateful for our time together and you weaving my story into your space. I’m in floods of tears re- reading it published in the world. I want folks to know they can reach out to David or I if they’d like, ask questions, learn more, connect. It would be my honour. ✨🙏
Thank you so much for sharing all your hard-won wisdom, as well as all the areas of uncertainty and doubt that have existed and still exist. Everything in here is so real, and I can already see that this is a real gift to a lot of people. Thank you Claire!
Claire, what a gift to read your words and experience today. I’m so sorry for what your family has walked through and how the medical system failed to help/advocate along the way.
I would be so grateful for the chance to ask questions and connect on the topic of long COVID as I look for some answers myself.
You’re so welcome Erika! I will think about the best way to invite this... do email me in the meantime though!
Claire, so sorry to read about your struggles during that period. And to observe the process of how health care staff treated your case is shocking but not unfamiliar. We simply don't have all the answers or enough information to cover long covid issues.
Great article 👏 happy to read about real testimonials that tell real truths.
No and do you know who was supportive? The chronic illness community - it took me a while to find them but when I did they were so welcoming. I don’t use twitter now as it served its purpose and I left the LC fb groups as there were too many suicides and my heart just broke for them. It’s been a very dividing time but I am grateful for my own resilience and my creative ways of getting through...
Yeah exactly this. We should discuss this sometime offline. There's more support being offered on local community levels benchmarked with same qualities from other pockets of the world. The findings are podcast worthy content and I'm happy to supply a crowd of listeners for a webinar if I can get my sh*t together 🥴
Defo! I’d love that! I burnt myself out reading threads on it all but I do want to be of service to others who are struggling - we’ve learnt a lot. ✨
Back for more coz I can't leave it alone 🥴🙄
So many testimonies now coming to surface of long covid symptoms, meanwhile cases are back up and new vaccines are being rolled out. We need to be discussing back stories and sharing best practices as it seems the health care community is just as burned out as the rest of us. I'm tired of answers that end with no solutions but waiting periods to offer.
Okay, rant over. Back to positive sunny affirmations. 🌞 #omshanti
The CI community is amazing. I have a CFS/ME group as well as being part of a CI Facebook group, and it is so reassuring to have a community on hand. You are not alone Claire x
Ok this is interesting... ill maybe look them up - I’m nervous to step back into those spaces as they made me quite unwell... because I was ever searching for hope and there wasn’t any! I’d like to be of service though so maybe that’s a better fit!
The FB one I’m in is CISFA and although I don’t spend a lot of time there it appears to be wholly positive and supportive. The other is a WhatsApp group of people I met during treatment 💕
I totally understand your nervousness, there are also quite a few groups I’ve had to come out of - the main thing is to look after yourself 💕💕💕
https://m.facebook.com/groups/810071422454039/?ref=share
Accepting what is and surrendering (in a good way). It saved me. Sounds like it saved your family too. Thank-you for sharing your story and Rae for this series. I agree, it's important to share and bare witness.
Yes Kim. And now things are brighter I can see why this was part of our bigger plan - do you get that too? ✨
I get it now. And am very grateful for it. But, not so much at the time. The pain was immense and I wasn't sure how I was going to make it through. Now, I wouldn't have had it any other way. Well, maybe a bit less bumpy, but I don't think I would've listened. The universe literally had to take me out, so I could be put back in. (If that makes sense?)
Yes exactly that. I thought we were connected to our true north but way more now... that’s a beautiful way of putting it!
I am also flipping off "the rules" and "the rulemakers" as I work at carving out a life of my own through the lens of Long Covid. Though there are times when I'm tempted to submit to the pressure of Conforming, all I need to do is play the tape forward a little and see myself bedbound for weeks on end to say, "Nope!"
In a way, Long Covid has been my Get Out of Jail ticket to focus on living the life *I* want to live and starting to walk *my* path. There's still the matter of allotting my energy appropriately, but I am finding things are flowing more easily the further along I go. Slow and Steady does lead to Victory.
That's such a beautiful sentiment, and while I wish it were easier to walk our own paths WITHOUT a hardship like long COVID forcing us to do so, I agree that it is definitely one of the gifts that comes with unexpected changes to physical and mental capabilities.
Well, it was either that or run screaming into the night. I've already pulled out of one death spiral and that was plenty enough!
That is good news and often I am reminded that we see more when we walk slower... ✨🙏🌿
“Even if we're living a life that nobody else understands, and even if society at large doesn't make space for it, it’s still our life, isn't it? It's not anybody else's life, it’s ours.” ❤️❤️
Yesss this was one of my favorite mic drop moments too :)
✨🙏💝 thank you for witnessing it Ariana!
My story is very different by my husband was diagnosed with a chronic illness just before COVID started and we have two young kids (and homeschool due to COVID high risk). I think part of the process you described going through without using these words, and one I’ve been working through, is just grieving the life we used to/were supposed to have before we can accept and move on to what it is now. Being very stubborn about carving out a few times a day just for me is my only advice for the caregiver. I do some sort of movement/exercise each morning (bad hip since having kids) and I focus on rest or creativity after the kids are asleep. We don’t have social clubs or events or busy calendars in the traditional sense but our days our still busy and keeping my nights and weekend emptier helps me stay balanced.
I really relate to this - keeping nights and weekends empty is also a huge cornerstone of my health strategy, but it is so hard not to feel obligated, or feel FOMO, and to try and feel normal and vital when you are bucking the social expectations in this way. I still am in a phase where I ignore my needs and make too many plans and pay for it.
Balance is the key of it all isn’t it... often my day felt “ruined” straight away and I’ve changed my mindset massively because of that...
Thank you for creating space for stories like this one, Rae. It couldn’t have been more timely.
I'm glad it came at the right time for you, Erika. This project is my very favorite and I always feel deeply inspired and grateful after these convos.
✨🙏
Rae and Claire thank you so much for sharing this insightful, powerful interview.
Shedding light on how chronic illness really looks and the pitfalls of our medical system are the only way change can occur.
I have worked in healthcare for decades and witnessed countless patients suffer and feel invisible. Many of their symptoms are out of my wheelhouse as a neuro-musculoskeletal practitioner (I’m a chiropractor), so while I may not be able to always help their physical body I CAN always listen and bear witness.
I try very hard to be fully present with them and am constantly amazed when folks tell me this is the only place they feel heard. I hope, in some small way, it helps their health.
May you move forward to a time of improved energy, less pain and frustration. I truly cannot imagine going through all of that, you are a complete and total rock star of a human Claire. You too Rae, as I know you’ve travelled your own rough road and I appreciate you both sharing the way you have. It helps many people.
Listening and bearing witness really is SUCH an important role to play! During my first experience with chronic pain, after a failed surgery and seeing tons of doctors very briefly, I saw an acupuncturist whose appointments were 1.5 hours long. Even more than the acupuncture, the long appointment and her time was healing in itself.
Donna! Thank you so so much for sharing that. Yes feeling heard is a huge part of it - that’s why I came to Substack to hear myself and my thoughts away from no one caring!
Thank you Rae and Claire for sharing Claire’s story. Through the worst moments of my own lockdowns and illness ‘journey’ I have had moments of gratitude that I have not been responsible for keeping small humans alive at the very same time. I’m glad Dave is doing better at the moment and I hope its sustained for him, for you & for your family. Here’s to moving the dial on culture through gentle activism, you are definitely an Armchair Rebel 🙏🏻
<3
You’re welcome and I hope today has brought you something in the way of sparkle Michelle. ✨🤗
What’s missing from the Long COVID story is what losses the partners and caregivers have to grieve alongside their sick loved one. There was no rule book for this, given how novel the virus and the long-tail version were/are. By comparison, there are tons of resources out there for families/caregivers dealing with cancer grief.
This conversation was huge in this respect. Claire, your responses to your husband, to life, and to that school teacher - with a newborn strapped to your chest - were so incredibly human and real.
Rae, thank you for your incisive questions and comments here. You steer these conversations beautifully. Claire, thank you for letting us into this incredibly difficult part of your life story 💛
Rae is a wide space holder - this work creates ripples far wider than we can ever know. Sending sparkles to you lovely. Xx ✨
Thank you Rae for sharing Claire’s story. My eyes are full of tears trying to type but Claire, know that you are seen and you are held and you are loved. Hugs to you and your sweet family 💗
Thank you! I see you and appreciate that so so deeply. It’s meant so much to me to go on this journey of writer-y hope and be able to be honest at the same time... ✨🙏
I’m sat here wide-eyed and rocking. I woke up in panic as I often do after my visit to intensive care. My beautiful kittlets were wowing for food. I lost it. Went downstairs and started throwing cat treats everywhere and freaking out about how I couldn’t do this, whilst hubby stood and stared at this new odd turn of things. I mean wtf could he do accept hug me when eventual collapse happened, which he naturally did. I feel like I’m so close to loosing ‘it’ all the time, whatever it is. Reading this interview has helped so much. I really need to.....actually not sure what but surrendering sounds way better than my trying to control everything 💜
I’m here for you! ✨🙏
The messages of acceptance, surrender, and what a gift that can be to ourselves/our loved ones shines through in your story, Claire. There’s a balance, always. And, it sounds like you and Dave found it together. (I was also cheering when you booked the trip!) Thank you for sharing, Claire and Rae ✨
I feel like this is one of those 'stars aligning' moments Claire and Rae. I saw this in 'notes' which I don't often get a chance to look at, and I was so struck by it - particularly as you discussed how it was as hard to revisit this today as it was when you first wrote about it. I know those feelings so intimately. Today I published my most personal post ever here on substack on the subject of my chronic and overlapping complex health conditions. Within five minutes I had a voice message saying 'thank you so much for being someone that has made me feel less alone'. This is what I want to say right back to you. I'm so sorry for your experience, and I have so much to say - it's probably best summed up in my post!! https://open.substack.com/pub/emmasimpsonauthor/p/whose-body-is-it-anyway?utm_campaign=post&utm_medium=web @Rae I will be in contact - I would love to be able to contribute to your library. This is wonderful, thank you both for your honest, openness and bravery. This is where we stand up and we matter.
Thanks to Claire for sharing this story and Rae for the space to make it happen. These stories really help us all who have gone through confusing medical stuff, dismissive doctors, and realizing that we need to change how we relate to society even if society doesn't make that easy if we're going to live healthy lives.
I noticed immediately the part where Claire's doctor mentioned she might be going into menopause because I am certain that a lot of stuff I've been complaining about that my doctor just wants to give me pills for is related to perimenopause to which my own doctor (at a women's clinic in the Bay Area no less) said, "could be but really unlikely because you're way too young." I'm 43. But even if I was 23, the total dismissive experience was deflating.
So much more to say ... this is a whole whole lot on one family's plate at one time so I think what I want to say is that I'm glad Claire and Dave seem to be figuring out moving forward together through your similarities and differences and all of the challenges and that I'm inspired by the changes you've made to life that you share here on Substack. <3 <3 <3
My doctor said we start to see symptoms of peri menopause from age 35! Stress has such an impact on hormones - my periods are still shorter than I’d like in between. Thanks for your support Kathryn!!
This was heart-wrenching to read and also seeing how the experience has shaped Claire into taking up the space she needed in her life is so beautiful. Thank you for sharing her story.
This is what responsibility is truly about. Being the person that knows that things will change if you do something about it.
Having that courage when doctors just give up and treat people like tech support “sorry you are out of warranty” and finding out that only those who are suffering are the ones brave enough to talk about it and do something about it just tells us that society had given up hope.
“Just rest” is great advice, and I would also add a sprinkle of joy into everyones day.
During the lockdowns the only way I managed to finish my day after caring for someone was to watch Shaun of the Sheep, Ratatouille and so. That moment of silly joy was the one that kept giving me the opportunity to rest for a bit and wake up knowing we needed to keep building our day to day.
I needed to read this tonight. NO I CAN’T is actually OK.