When I had severe, unexplained chronic back pain in my early to late 20s, I would have days when my pain subsided enough to make room for joy, pleasure, ease. Weirdly, a layer of guilt that would appear. Am I *allowed* to feel this way? Do I really have chronic pain? Is it still ok for me to ask for help? Pain, especially without a diagnosis to give us that longed-for permission to feel it, is such a mindfuck.
It feels a little odd to ‘like’ an interview I’m in! Thank you for the time, attention and care you put into our conversation. You made it easy for me to be braver. Here’s to the Ladies Illness Library, I can’t wait to meet the other Ladies in weeks to come.
I think that "liking" one's own interview is absolutely required :) Thank you again for the wonderful conversation and for being brave and generous in sharing your story.
Fantastic interview! Brilliant initiative! I’ve applied to be interviewed and very much look forward to it. I really felt as if i was cast aside by society at the point of disability by chronic illness. Slung on to a pile with all the other chronically ill suffering. What I found most shocking is that I was expected to stay there. It’s like you’re not allowed to get up and fight for your right to a life, to health, to healing. When I refused to accept an incurable diagnosis and set off on a journey into the unknown all alone, I was told I was selfish, that I didn’t know what I was doing and that I was too vulnerable to make decisions regarding my own health. I’ve long since had this image of me standing up on this mountain of the cast aside, rising strong as I join hands with others who want to rise above the limitations placed upon us - like the warriors we are👯♀️👯♀️👯♀️👯♀️
Thank you, I’ve had this image in my mind for so long - I’d love an artist to draw what I see in my minds eye. Hope to speak soon or as soon you’re ready.
Aww you’re so welcome - I def need to write about this vision. Up until now, I think this is the first time I’ve voiced a vision I’ve held in my minds eye for such a long time 🙏🦋🩵
“What I found most shocking is that I was expected to stay there. It’s like you’re not allowed to get up and fight for your right to a life, to health, to healing.” Amber!! YES.
Thank you Lindsay🙏 I’ve realised I need to write about what I’ve shared here as even though this is the way I’ve felt for so long, I haven’t yet written much about this aspect of my unauthodox journey. It’s beyond shocking really, when you think about it x
What you said about being allowed to feel joy or happy when you are on medical leave from work touched a nerve. Moments of joy or levity felt wrong when I was healing. How sick is that??!! We can’t allow ourself to feel a moment of happiness because we’re not working and being ‘productive’. Sick indeed.
Rae, I’m loving this series already. The interview format is a great addition to your own investigations into medical self-advocacy. Michelle, you started the Library with a compelling read!
Love this series and excited to watch it develop. Thanks to Michelle for sharing her story. Really resonated with the value of saying "disability" or saying the name of a chronic condition in order to normalize and destigmatize it. When I first received a diagnosis of double depression, I definitely had that huge relief of "it's not all in my head." (Ironic in that it's a head condition.) The label no longer serves me quite that same way but it had its value at the time and helped me learn how to say, "there is a reason that I can't DO DO DO all the time and it doesn't say anything negative about my personal worth."
I think it's so interesting how many of us feel such a deep connection between being super productive and personal worth. To me it feels almost like a given. I'm not sure I'll ever fully unlearn it, but awareness is definitely a good first step. It sounds like you have broken free a bit, which I applaud!
Awareness definitely helps. It was certainly ingrained into me in the academic setting since I was always easily “a good student” and then of course reinforced in our culture
I’m very excited for this series Rae, and it was lovely to hear from Michelle and recognize a lot of the emotional ups and downs (even though my diagnosis is not ME/CFS). I also identified with having to be your own “fun police”. It’s not great!
I struggle not only with feeling my worth questioned by society, but by myself. I get angry at where I “could be” had I not spent half my life (dx age 16, I’m now mid 30s) managing a chronic condition.
It feels like a second full time job and I’ve never felt “amazing” even if everything is humming along and all my prescriptions and practices are aligned. I feel like I’ve been tired since puberty.
Similar to you Rae, I also worked in tech (FAANG) but unlike you I never became a founder or took any sort of big risks bc my health was already struggling so much just with the pressure of being an IC at big tech.
I’m currently not working bc I was part of a mass layoff, but desperate to get back there (uhm... being chronically ill is expensive) and yet I also know that ideally I would find a part time role with benefits. But what company even offers that? Very few. Especially now.
Our world really isn't built to support chronic illness, and it is DAMN expensive to be sick. I think Michelle really described the struggle with self worth so potently, and I'm glad it resonated with you, though I know that doesn't make it any easier.
This literally make me cry! How sad, heartbreaking and fucked up it is to be sick. Add isolation to this mix and you're left questioning your longevity. (I feel Michelle's questioning longevity remark everyday living in the city I live).
I’ve struggled to find roles that allow a bit of flex for chronic illness. Its so wasteful. Not every job/task needs to be done at a specific point in the day or week. Employers are missing out because people managing chronic illness are expert at triage and time/resource management.
Yes, Michelle! Employers really are missing out. I’m not sure how it’s going in AUS but here, the economic downturn mean suddenly the companies who were going more permanently flexible post Covid are forcing everyone back to the office 3-5 days a week.
I was reading about a few companies in AUS experimenting with 100-80-100 work style and the ones who’ve done it are keeping it or extending the trial. I really desperately hope that in the next 5 years we see a shift towards more flexible working styles at a larger array of companies 🤞
I feel your pain Michelle. You're right in that employers are missing out. But that's what it is right, You don't know what you don't know.
I avoided work because I woke up in pain and it was already too much to deal with. Who can cope with a five-day work week when even getting out of bed is hard? I'm now blessed to have part-time job teaching at a Kindergarten. Working 2 days a week meaning a 5 day long weekend sounds more of a better work-life balance to me.
In the mean time I've worked on reducing and managing my pain better.
Thank you for your comment, Neha. I’m glad you’ve found work that fits your energy levels. Pain is an energy suck I don’t expect to be able to work full time in the immediate future. I will be able to work part time, especially with some flexibility. A lot of (for example) admin tasks don’t need to be done on a specific day, as long as they are done regularly. So I might not be able to commit to every Tuesday, but I could commit to 8 hours’ remote work done between, say, Monday and Wednesday. During parts of the pandemic I worked like that because I was often covering parts of others’ shifts, my regular work was done spread out around those, sometimes in the middle of the night if I couldn’t sleep. So more flexibility is possible than many employers realise. I am also an employer, so I am not being charitable.
I hope so too, Lindsay. As I was working in a family business I’ve had the option of experimenting on myself and found a lot of flexibility became possible when I let go of the (false) idea that everything needs to be done between 9-5 strictly. Some tasks/jobs yes, but many not. We need some creative thinking. Even ‘healthy’ or ‘normal’ people could benefit from a more flexible approach. Even employers could.
R: I don’t think we have the language or skills to handle this topic in our culture.
I love this interview and I will fill out your form after I'm done reading. I have much to share. I hope your library invites more women to talk about the issues and find the connection they seek.
This is beautiful. Thank you for doing this. 💓 from Hong Kong.
Michelle, you are blessed to have a doctor you trust on your journey. One thing I observe with family and friends, all ladies, is they flail about changing doctors, diets and lifestyles, swearing that this or that is the answer, until I see them 6 months later and now it is a chiropractor that is the end all. My husband‘s grandmother, an immigrant from Italy, called people that had some thing wrong all the time, “She’s an ambulance!“, in her Italian accent. She has been gone for 35 years and yet I hear her voice and realize after reading this article that it was always about women. Why is that?
I live with a chronic lung disease that will not get better. My best advice to living with joy is practical acceptance of one’s illness, working with trusted docs, and being thankful every day to be here. The Lord is my real joy and I am grateful every day for my family and faith. Let go of the “boo-hooness” in your life!
Mary, I appreciate you reading and sharing your perspective. I’ve been what your grandmother would call ‘an ambulance’, and judged as harshly. Your grannie grew up in a time where women were ignored and their needs treated with indifference or hostility by pretty much everyone. I’m saddened that is the way she and, it seems you too, have had to deal will chronic illness. I always wonder who benefits from labelling people with problems as complainers? I’m glad you find your faith a blessing, and no wonder, Christ didn’t tell the marginalised to let go of their ‘boo hooness’, he healed them and listened to them and fed them.
I’m sorry, I feel like I was misunderstood in my comment. I only meant to say that living with a debilitating illness requires support from good caregivers, understanding, loving friends and family, and a carpe diem attitude. Every day is a gift to me.
Michelle, thank you for this interview...and again I apologize for my thoughtless comment.
Thank you for keeping our conversation going Mary, we’re all fumbling through trying to find the right words. Sometimes we stumble. What you call carpe diem, I call acceptance and living within my limits. I’m glad we both keep on living our best life.
When I was first diagnosed with Chronic Fatigue Syndrome I immediately went into denial. Several years later when I was also diagnosed with fibromyalgia I felt despair. I’ve been struggling for the past three decades to figure out a way of feeling productive within my constraints in order to create some purpose and meaning. It wasn’t enough to simply “be”. Even upon retirement due to my ill health I tried to turn volunteering into a job.
The only two things that I’ve done “right” have been to keep moving my body, on the advice of my rheumatologist, and to seek out opportunities for joy and laughter at every turn. I believe joy is our birthright but I know this is in defiance of the deeply held cultural norm that joy is only for the productive. Malingerers and welfare bums are not ever allowed to look like they’re having a good time.
When I had severe, unexplained chronic back pain in my early to late 20s, I would have days when my pain subsided enough to make room for joy, pleasure, ease. Weirdly, a layer of guilt that would appear. Am I *allowed* to feel this way? Do I really have chronic pain? Is it still ok for me to ask for help? Pain, especially without a diagnosis to give us that longed-for permission to feel it, is such a mindfuck.
SUCH a mindfuck
It feels a little odd to ‘like’ an interview I’m in! Thank you for the time, attention and care you put into our conversation. You made it easy for me to be braver. Here’s to the Ladies Illness Library, I can’t wait to meet the other Ladies in weeks to come.
I think that "liking" one's own interview is absolutely required :) Thank you again for the wonderful conversation and for being brave and generous in sharing your story.
Fantastic interview! Brilliant initiative! I’ve applied to be interviewed and very much look forward to it. I really felt as if i was cast aside by society at the point of disability by chronic illness. Slung on to a pile with all the other chronically ill suffering. What I found most shocking is that I was expected to stay there. It’s like you’re not allowed to get up and fight for your right to a life, to health, to healing. When I refused to accept an incurable diagnosis and set off on a journey into the unknown all alone, I was told I was selfish, that I didn’t know what I was doing and that I was too vulnerable to make decisions regarding my own health. I’ve long since had this image of me standing up on this mountain of the cast aside, rising strong as I join hands with others who want to rise above the limitations placed upon us - like the warriors we are👯♀️👯♀️👯♀️👯♀️
Wow that mountain image is powerful! Here's to joining hands and rising up! I look forward to checking our your interest form!
Thank you, I’ve had this image in my mind for so long - I’d love an artist to draw what I see in my minds eye. Hope to speak soon or as soon you’re ready.
I'm so moved by your vision on top of the mountain. I'm getting there with you! It's a great vision to behold. Thank you for your inspiration!
Aww you’re so welcome - I def need to write about this vision. Up until now, I think this is the first time I’ve voiced a vision I’ve held in my minds eye for such a long time 🙏🦋🩵
This is where magic happens.
“What I found most shocking is that I was expected to stay there. It’s like you’re not allowed to get up and fight for your right to a life, to health, to healing.” Amber!! YES.
Thank you Lindsay🙏 I’ve realised I need to write about what I’ve shared here as even though this is the way I’ve felt for so long, I haven’t yet written much about this aspect of my unauthodox journey. It’s beyond shocking really, when you think about it x
What you said about being allowed to feel joy or happy when you are on medical leave from work touched a nerve. Moments of joy or levity felt wrong when I was healing. How sick is that??!! We can’t allow ourself to feel a moment of happiness because we’re not working and being ‘productive’. Sick indeed.
I also felt like this part of the interview touched me the deepest. It's a profoundly unhealthy belief that we seem to all carry.
Rae, I’m loving this series already. The interview format is a great addition to your own investigations into medical self-advocacy. Michelle, you started the Library with a compelling read!
Thank you! :)
Thank you, Francis ☺️
Love this series and excited to watch it develop. Thanks to Michelle for sharing her story. Really resonated with the value of saying "disability" or saying the name of a chronic condition in order to normalize and destigmatize it. When I first received a diagnosis of double depression, I definitely had that huge relief of "it's not all in my head." (Ironic in that it's a head condition.) The label no longer serves me quite that same way but it had its value at the time and helped me learn how to say, "there is a reason that I can't DO DO DO all the time and it doesn't say anything negative about my personal worth."
I think it's so interesting how many of us feel such a deep connection between being super productive and personal worth. To me it feels almost like a given. I'm not sure I'll ever fully unlearn it, but awareness is definitely a good first step. It sounds like you have broken free a bit, which I applaud!
Awareness definitely helps. It was certainly ingrained into me in the academic setting since I was always easily “a good student” and then of course reinforced in our culture
I’m very excited for this series Rae, and it was lovely to hear from Michelle and recognize a lot of the emotional ups and downs (even though my diagnosis is not ME/CFS). I also identified with having to be your own “fun police”. It’s not great!
I struggle not only with feeling my worth questioned by society, but by myself. I get angry at where I “could be” had I not spent half my life (dx age 16, I’m now mid 30s) managing a chronic condition.
It feels like a second full time job and I’ve never felt “amazing” even if everything is humming along and all my prescriptions and practices are aligned. I feel like I’ve been tired since puberty.
Similar to you Rae, I also worked in tech (FAANG) but unlike you I never became a founder or took any sort of big risks bc my health was already struggling so much just with the pressure of being an IC at big tech.
I’m currently not working bc I was part of a mass layoff, but desperate to get back there (uhm... being chronically ill is expensive) and yet I also know that ideally I would find a part time role with benefits. But what company even offers that? Very few. Especially now.
Our world really isn't built to support chronic illness, and it is DAMN expensive to be sick. I think Michelle really described the struggle with self worth so potently, and I'm glad it resonated with you, though I know that doesn't make it any easier.
This literally make me cry! How sad, heartbreaking and fucked up it is to be sick. Add isolation to this mix and you're left questioning your longevity. (I feel Michelle's questioning longevity remark everyday living in the city I live).
I’ve struggled to find roles that allow a bit of flex for chronic illness. Its so wasteful. Not every job/task needs to be done at a specific point in the day or week. Employers are missing out because people managing chronic illness are expert at triage and time/resource management.
Yes, Michelle! Employers really are missing out. I’m not sure how it’s going in AUS but here, the economic downturn mean suddenly the companies who were going more permanently flexible post Covid are forcing everyone back to the office 3-5 days a week.
I was reading about a few companies in AUS experimenting with 100-80-100 work style and the ones who’ve done it are keeping it or extending the trial. I really desperately hope that in the next 5 years we see a shift towards more flexible working styles at a larger array of companies 🤞
I feel your pain Michelle. You're right in that employers are missing out. But that's what it is right, You don't know what you don't know.
I avoided work because I woke up in pain and it was already too much to deal with. Who can cope with a five-day work week when even getting out of bed is hard? I'm now blessed to have part-time job teaching at a Kindergarten. Working 2 days a week meaning a 5 day long weekend sounds more of a better work-life balance to me.
In the mean time I've worked on reducing and managing my pain better.
Thank you for your comment, Neha. I’m glad you’ve found work that fits your energy levels. Pain is an energy suck I don’t expect to be able to work full time in the immediate future. I will be able to work part time, especially with some flexibility. A lot of (for example) admin tasks don’t need to be done on a specific day, as long as they are done regularly. So I might not be able to commit to every Tuesday, but I could commit to 8 hours’ remote work done between, say, Monday and Wednesday. During parts of the pandemic I worked like that because I was often covering parts of others’ shifts, my regular work was done spread out around those, sometimes in the middle of the night if I couldn’t sleep. So more flexibility is possible than many employers realise. I am also an employer, so I am not being charitable.
Wow.....powerful interview and sharing you two. Michelle, thank you for this window into your life and the wisdom you have earned through it ❤️🙏🏻.
Thanks for reading, Michael!
I hope so too, Lindsay. As I was working in a family business I’ve had the option of experimenting on myself and found a lot of flexibility became possible when I let go of the (false) idea that everything needs to be done between 9-5 strictly. Some tasks/jobs yes, but many not. We need some creative thinking. Even ‘healthy’ or ‘normal’ people could benefit from a more flexible approach. Even employers could.
Hello Rae, this needs to be said louder:
R: I don’t think we have the language or skills to handle this topic in our culture.
I love this interview and I will fill out your form after I'm done reading. I have much to share. I hope your library invites more women to talk about the issues and find the connection they seek.
This is beautiful. Thank you for doing this. 💓 from Hong Kong.
Neha
100% agree we don’t have much language or skills, partly because we all have so much shame and self-blame. You might enjoy https://armchairrebel.substack.com/p/being-good-hasnt-healed-me
Michelle, you are blessed to have a doctor you trust on your journey. One thing I observe with family and friends, all ladies, is they flail about changing doctors, diets and lifestyles, swearing that this or that is the answer, until I see them 6 months later and now it is a chiropractor that is the end all. My husband‘s grandmother, an immigrant from Italy, called people that had some thing wrong all the time, “She’s an ambulance!“, in her Italian accent. She has been gone for 35 years and yet I hear her voice and realize after reading this article that it was always about women. Why is that?
I live with a chronic lung disease that will not get better. My best advice to living with joy is practical acceptance of one’s illness, working with trusted docs, and being thankful every day to be here. The Lord is my real joy and I am grateful every day for my family and faith. Let go of the “boo-hooness” in your life!
Mary, I appreciate you reading and sharing your perspective. I’ve been what your grandmother would call ‘an ambulance’, and judged as harshly. Your grannie grew up in a time where women were ignored and their needs treated with indifference or hostility by pretty much everyone. I’m saddened that is the way she and, it seems you too, have had to deal will chronic illness. I always wonder who benefits from labelling people with problems as complainers? I’m glad you find your faith a blessing, and no wonder, Christ didn’t tell the marginalised to let go of their ‘boo hooness’, he healed them and listened to them and fed them.
I’m sorry, I feel like I was misunderstood in my comment. I only meant to say that living with a debilitating illness requires support from good caregivers, understanding, loving friends and family, and a carpe diem attitude. Every day is a gift to me.
Michelle, thank you for this interview...and again I apologize for my thoughtless comment.
Thank you for keeping our conversation going Mary, we’re all fumbling through trying to find the right words. Sometimes we stumble. What you call carpe diem, I call acceptance and living within my limits. I’m glad we both keep on living our best life.
When I was first diagnosed with Chronic Fatigue Syndrome I immediately went into denial. Several years later when I was also diagnosed with fibromyalgia I felt despair. I’ve been struggling for the past three decades to figure out a way of feeling productive within my constraints in order to create some purpose and meaning. It wasn’t enough to simply “be”. Even upon retirement due to my ill health I tried to turn volunteering into a job.
The only two things that I’ve done “right” have been to keep moving my body, on the advice of my rheumatologist, and to seek out opportunities for joy and laughter at every turn. I believe joy is our birthright but I know this is in defiance of the deeply held cultural norm that joy is only for the productive. Malingerers and welfare bums are not ever allowed to look like they’re having a good time.