I would just like to say that Emily sent me the best email I have received this month, which said, "I'm all good, psyched to chat vulvas on the internet, let's do it!" I just want to THANK EMILY for being so open with this topic that is usually kept totally hushed up.
I would love to share the discussion. I had quite a vulva journey as a result of heavy chemotherapy and the resulting brutal menopause. And I learnt a few things that may shorten the journey for others.
Welcome, Genevieve! I'd love to speak to you. In full transparency I have a massive backlog of people on my list for this series, and I'm also taking a maternity leave in about six weeks, so realistically it could be a bit of time before a conversation can happen. That said, I hope to keep in touch and help get your information out there--I know early menopause as a result of chemo is not discussed enough and increasingly common due to the number of younger women getting breast cancer (not sure if that's your story, but that's the trend I've read about). Anyways, thanks for writing in and let's please keep in touch.
Hey if you haven’t already found it there’s a great support group on fb / internet called Menopause and Cancer https://menopauseandcancer.org/ would be great to see you there x
Oh Emily and Rae, thank you so much for this interview. I have so much to say. Did a doctor actually tell you to have a gin and tonic and go and have sex?!?! Did that actually happen??? I had my own 'I'm not going to examine you when you're hysterical' which I talk about here https://emmasimpsonauthor.substack.com/p/whose-body-is-it-anyway but OMG??????? Seriously???? That doctor should be struck off - I have a special word for dismissive male gynae doctors. It begins with a c and as my friend says: 'if you haven't got one, or you are one, then get your mitts off mine'.
In the aftermath of intense grief from bereavement I threw myself into work - (I was also on maternity leave with my first child who had contracted meningitis and nearly died). I buried myself in activity. Back to work, moved house, got promoted, had another child, more work, moved house, transferred job, moved house, got promoted...you get the gist. My body exploded about 9 years ago, (initially with depression and anxiety) and then the physical deterioration followed. Like you say, Emily - so many 'unrelated' things, but which cannot be unrelated. I myself take the holistic angle, look after my lifestyle and diet, and no longer work in anything resembling a traditional career. Writing is now my life, as and when I can do it.
Yes the supermarket lights can be too bright, the sensory input overwhelming, or it can be intense pain and fatigue. New delights every few months. I probably had almost 2 years cumulatively off work over an 8 year period. The feeling of being worthless, unreliable, a let down, a liability, a flake, even though I was actually fucking brilliant at my job. Nonetheless I had to walk away. (Once forcibly and once by choice).
I also live on a different understanding of time - today is today. Tomorrow may be totally different. My actual today has been horrendous which is why I feel so connected to this subject right now in this moment. Needing to talk with those who understand.
I would love to collaborate and throw my spoons in the collective drawer every now and then. Today I have negative spoons, but it won't always be like that, and I'd love to be a spare spoon when others need them.
Much love to both and thank you for bringing such insight into this and bringing it to the fore. 🙏
Thank you for writing in, Emma, and I'm glad this came at a good time for you. I totally resonate with so many elements of your story, particularly the pushing and pushing at work, and then the decision to walk away despite knowing that you are "fucking brilliant" at your job, which I LOVE that you just OWN, and I really need to take a lesson on that from you!
I hope we can keep in touch. Right now I have an enormous backlog of interviewees for this series (which is both wonderful and terrible at the same time), but I hope we can speak in the future.
haha thank you!!! And you know what? I really was fucking good at my job!! And so are you!! It was wonderful to grow out of the self-deprecation of early-mid adulthood and realise that, but then to be struck with CI - it was not easy to hold onto at all. But in reflection, hell yes.
I would love to keep in touch - I might even have submitted something to you before but I'm honestly not sure! I'm not going anywhere anytime soon so yes let's stay in touch and I'd love to speak in due course. I don't yet understand the difference between subscribing and following on here, if you do one of those and then we'll def stay on each other's radar until the time is right?! Thank you for all that you do, look forward to connecting more x
Hi Emma, thanks so much for your responses to the interview, and for sharing your story too, it means more to me than I can say. I'm so glad we've connected :-) And yes, unfortunately that is word-for-word what the gynaecologist said!
Thank you Emily and Rae for this eye-opening and vulnerable article!
I was lucky enough to find a great therapist after I lost loved ones during covid, quit a job I burned out from, and released several layers of my old self. She told me that grief comes in various forms not just a loss of a loved one and that each loss comes with each processing of the grief cycle. So, each person, relationship, job, and identity that I lost since the start of covid needed its own processing of the grief which has compounded. The processing of all those cycles of grief overlapped with each other especially when they were happening one after another. Due to my therapist, I became aware that the layers of grief were a big part of my burnout.
Thank you to both of you, Emily and Rae, for bringing this conversation about grief to light here in Substack. None of us are taught how to process grief and as we all know, by the time we realize it, including myself, it has already manifested itself physically, mentally, emotionally, and spiritually. Thank you both for shining your light! You are both making a difference in the world with your writing and by being YOU!
I love the phrase "released several layers of my old self." Thanks for sharing your story, and I'm so glad you found a good guide. It's crazy to me how little we talk about "other" types of grief.
I totally agree, Rae, there is so much other types of grief, like loss of a belief system, mindset, lifestyle, energy, and others that we don't even acknowledge as a society. Everyone is walking around with unprocessed grief that they aren't even aware of.
Beautifully shared. Grief is not a problem to fix. It's an embodied experience that needs to be metabolized. Sadly, too many mental health professionals and care providers aren't trained in basic grief and loss literacy. This. Needs. To. Change.
Thank you, Grief Unleashed! Yes, I totally agree with you!! When I am driving and I see a poor, deceased animal on the side of the road, I feel the loss of that animal I never even met. That, too, needs a grieving process.
I agree, there needs to be more training and more specialists trained in grief counseling and therapy.
Thank you, and your therapist sounds amazing! I love what you share here -- it's clear you have so much insight into how grief shows up in your life, and how all those layers connect. Powerful xx
Hi Emily! Thank you! Yes, she is amazing! I am so lucky to have found her at a time I needed a therapist because I kept putting it off for so long. I learned that grief teaches us and gives us lessons about how to look within ourselves instead of looking outside of ourselves for love, comfort, soothing, and reassurance that we are going to be okay even though our losses can be deep so can our own well of self-love.
Another area where I think we don’t allow for grief is in the transition to motherhood. We focus so much on the gift of the child, we forget to honor the pieces of ourselves that are left behind that we may grieve.
Absolutely true. That one can be so complex because not only is grief not discussed, but any sense of grief is saddled with shame that you shouldn't be feeling grief.
I had this exact conversation with my 8-months pregnant friend a few weeks ago! It's been one of the most gorgeous parts of launching GriefSick -- that people tell me about all of their griefs. I think the grief that accompanies the transition to motherhood, and the transition to menopause, are really under-explored.
Such an important point Kim. Grief often gets triggered during life transitions as it can signal a loss of identity, relationships, income, title, security, etc. Grief is a normal, natural and healthy response to loss. What isn't healthy is our Westernized culture aversion to anything related to the so called dark and messy parts of life.
In awe of this process of going through so much pain and loss and discovering that you're grieving and then working through grief whilst simultaneously healing (to some degree) your body through diet. It makes so much sense. There are numerous accounts of dietary changes (specifically whole food, paleo, vegetarian, Mediterranean, and/or fasting diet combinations) curing many physiological and psychological issues, including cancer. Unfortunately, these accounts remain a "fringe" topic, often scorned by the Medical Industrial Complex.
I wonder if we couldn't all benefit from seeing all manner of loss as grief and learn how to navigate the grieving process to deal with it. I'm thinking specifically of the loss of childhood, or the loss of a close relationship, or the loss of vocation as we leave the workforce and enter retirement. The application for grief therapy is seemingly endless.
Finally, I'm learning more about how inadequate (and sometimes downright dangerous) female sexual healthcare is. Sometimes I think of the extremes (like FGM), but there is so much quiet violence in the everyday treatment of women in the healthcare field.
Thanks for your thoughtful note, Teague. I agree that there needs to be way more discussion about grief in all the contexts you mentioned, and I think that starting and nurturing that discussion is part of Emily's mission now, to all our benefit!
Thank you, Teague, and yes, "quiet violence" is a great way of putting it. Understanding loss to be an inescapable part of life is very much part of my mission (well articulated, Rae!), and Francis Weller's work is a great place to start, if you're interested in a nuanced look at grief:
I don’t know if I should feel happy or sad learning that the symptoms of ME/CFS (had to Google the abbreviation) fit my undiagnosed chronic illness perfectly.
I’ve been able to manage the symptoms with holistic approaches for years but it’s still very much a seasonal experience. Although, my symptoms could be a result of a combination of things and not only ME/CFS, like C-PTSD, PTSD, depression and being a highly sensitive introverted person on top of those disabilities.
Unfortunately, seeking diagnosis for chronic illness totally depletes my energy. The process is just too complex due to the overlapping symptoms of illnesses and incompetence of doctors.
But the worst aspect of all of this is absolutely the grief of loss—a quadruple whammy.
Hi Celesté, I'm so sorry you're in the place of loss and lack of diagnosis, I know it so well, it's so disorientating and painful. It sucks that doctors are so bad complex chronic illness. And yes, lots of things can contribute to fatigue too. As you may have seen in your Googling, the hallmark symptom of ME/CFS is Post Exertional Malaise, which is one thing that distinguishes it from other kinds of fatigue. ME Action is a trustworthy source of information https://www.meaction.net/learn/what-is-me/
I hope you find good support, whether from a doctor, holistic practitioners and/or other folks with fatigue or ME/CFS xxx
Thanks for writing, Celeste, and you are definitely not alone. There are also a couple other wise women with ME/CFS interviewed in this series (https://raekatz.substack.com/s/ladies-illness-library)--though only you can decide if reading more right now is helpful or hurtful (I have been in both places many times). I'm so sorry you have had to navigate the horrible maze of doctors, it really does feel pointless sometimes.
Also, sometimes my friend who has moderate/severe ME has the energy to come for a visit and it’s pure bliss to see a friendly face amid the isolation. We sit in the dark because we’re both light sensitive and talk quietly and with ‘low energy’ -- it’s the best day ever.
Thank you so much Rae for featuring Emily’s quietly powerful voice and vulnerability. Emily’s topic on grief is so incredibly important because there aren’t many spaces to talk openly about grief. I carry grief like a back-pack. I’m mostly bedbound and have lost too much and grief is just there everyday, it’s not something I can cry away, it’s there to be accepted and seen as part of my daily life. It seems less heavy to carry that way.
Hi Madelleine, thank you so much for sharing. I feel like people with Severe ME and housebound folks have so much wisdom to share on the topic of grief, and you're so right, "it's there to be accepted" (beautifully expressed). I feel a bit teary reading about your friend visiting and how you sit in the dark -- not because it makes me sad, because it fills me with joy, it's such deep intimacy of the kind that is hard to explain to someone who isn't disabled. It's the access intimacy that Mia Mingus writes of, right?
Exactly! I’ve gotten a very different perspective and deeper understanding of intimacy after becoming bedbound. There is so much vulnerability there, and sitting together in the dark and sharing exhaustion is very special.
1. I’ve grieved many things that aren’t a loved one dying. Vocation, hopes, dreams, the fading of relationships, the never ripening of relationships...
2. As a ‘praise junkie’ my first chronic illness was tough... locked in a cycle of perpetually disappointing people. In retrospect I realised I could focus on not disappointing myself. Despite it being an uphill battle I’m also the only person who is going to stay with me come what may, so there’s a peace there when I can find that place.
3. Haven’t been on holiday but I swear people who’ve had lived experience or witnessed it compassionately from up close reveal themselves in ways Emily describes. Its all so frictionless, if some kids kick a ball outside the park, noone thinks twice about kicking it back. There’s no judgement, no onerous sense of being burdened with care, you do your bit and everybody smiles and gets on with their lives.
I think the phrase "praise junkie" is just perfect, I'm going to remember that one. My hope for you and everyone with chronic conditions is to experience the type of vacation that Emily described, it does sound totally magical.
Your second point resonates with me so much, Michelle. "I realised I could focus on not disappointing myself", YES. I hadn't thought of it that way before. I sometimes talk about how one of the hardest, and most liberating, parts of becoming disabled was "becoming disappointing to others". As a woman, placed since birth in that self-sacrificing, caring role, to disappoint others felt like the most radical thing I could do.
Yes, so much. Reducing stress is important but its hard to avoid the stress of disappointing others’ hopes on top of your own. It still hurts, but not as much or as long as disappointing myself.
We are near 20 years into an autoimmune journey. Often I thinking numbing, a measure of trauma, and sadness go along. Allowing grief over loss and pain, intuitively sounds absolutely on point.
Sending hugs to you. So with you on the numbing, the trauma, the sadness. Allowing the grief in can be transformative, but sometimes we don't have the capacity to let it in, and that's ok too (I couldn't have given this interview, or set up GriefSick, until very recently). Wishing you gentleness as you navigate this difficult terrain xx
I grieved my previous life in which I was slowly fading out, dying out, in a perfect couple with nice children, a large house, a challenging job and feeling lonely and desperate. I grieved a "normal" life to embrace a life of being myself.
I grieved being a healthy person while going through cancer treatment.
I grieved one of my daughters going through a really hard time the past three years and somehow feeling that I failed to protect her.
Loved this exchange. The line 'no one told me this was grief ' reminds me of a quote by C.S. Lewis who shared 'no one told me that grief felt so much like fear. ' following the death of his beloved wife. I am new to this community and am slowly finding my way. I recently published a book called Grief Unleashed that traces my own experience with a life shattering loss. I am now a grief coach and death educator and am deeply passionate about helping people re-imagine a new relationship with life losses. I have so much to share and am grateful for this community 🙏.
Hi Rae and Emily, thank you SO much for this. I have premenstrual dysphoric disorder (PMDD), which means that for 27 years (since the age of 11) I lost half of every month to intense emotions and low mood. I was only diagnosed earlier this year, and now have a treatment plan in place and seem to have found a better life balance. I have grieved deeply for every job opportunity, relationship and friendship I lost due to my condition. My therapist first explained to me that you can grieve for lost experiences, as well as people. It was a profound moment and I allowed the tears to flow for many years until they abated (a little!). I'm also a highly sensitive person so have this to contend with too, although I wouldn't change it for the world. I'm just starting out as a writer and am new to Substack, so thank you so much Rae for creating this fantastic, inspiring, helpful resource.
Thanks for being here, Amy, and for sharing a bit of your story. While I am glad you have some clarity now, I am so sorry it took that many years to get a diagnosis (and it's horrifying how common this is). I also felt like my mind was blown when I first heard about grief in the context of chronic pain/illness. Looking forward to keeping in touch here on Substack!
Hi Amy, I'm sorry for all that you've lost, and am so glad you finally have good treatment. Your therapist sounds wonderful, it's so important to have guides in this grieving journey, people who can explain, give language and context. And hi fellow HSP! I think there's a lot of us in the world of chronic illness...
Thanks, Emily. Yes, finding my amazing therapist back in 2018 was life-changing. And realising that acceptance of who you are or have become is key too. Thanks again for this article, your journey really resonated with me.
Prior to getting Covid, I had done a fair share of anticipatory grieving for my mother, who has Alzheimers. Witnessing her personality/identity dissolve on the daily was excruciating.
Once I realized I have Long Covid, there were a few times when it hit harder, and I gave myself the space to grieve the loss of who I had been. Honestly, though, a lot of that loss happened during the intense time compression of caregiving.
Recognizing and honoring that loss has been the key for me to shift into Acceptance first (okay, here I am), then into curiosity (so what can I do now)? I'm definitely in a much better headspace now.
Hi Victoria, thank you for sharing -- caregiver grief combined with Long Covid grief, that must have been intense. I love that you have recognised and honoured the losses, and so great that you're in a better headspace now. It sounds like you really embraced and directed your healing from those griefs, which I find so admirable xx
I was so excited to see you reference Alice Wong and Josie George! I love their work. Can't wait to look at the other recommended books too. And thank you for starting this, I really resonated with the first post and I'm thinking about sharing with my mom or friends too.
Superb article as always. I did not know that was I was experiencing at the time of losing my job, my career, my income, my life as I knew it due to chronic illness was grief. I only realised once I’d moved through it and started to hear others in the community talk about it. It was an incredibly difficult period of time. Thanks for the recommendations on memoir, I’ve ordered a couple 🙏 my favourite genre x
Thanks Katie, I think that's a common journey for us -- to be located in our grief by other chronically ill folks. One of the many ways we care and support each other! Memoir is my favourite genre too :-)
I would just like to say that Emily sent me the best email I have received this month, which said, "I'm all good, psyched to chat vulvas on the internet, let's do it!" I just want to THANK EMILY for being so open with this topic that is usually kept totally hushed up.
I would love to share the discussion. I had quite a vulva journey as a result of heavy chemotherapy and the resulting brutal menopause. And I learnt a few things that may shorten the journey for others.
Welcome, Genevieve! I'd love to speak to you. In full transparency I have a massive backlog of people on my list for this series, and I'm also taking a maternity leave in about six weeks, so realistically it could be a bit of time before a conversation can happen. That said, I hope to keep in touch and help get your information out there--I know early menopause as a result of chemo is not discussed enough and increasingly common due to the number of younger women getting breast cancer (not sure if that's your story, but that's the trend I've read about). Anyways, thanks for writing in and let's please keep in touch.
https://menopauseandcancer.org/ Please share this link far and wide Rachel - this group has been a lifesaver for me
Thanks. No hurry at all. All the best for the coming weeks
Hey if you haven’t already found it there’s a great support group on fb / internet called Menopause and Cancer https://menopauseandcancer.org/ would be great to see you there x
Oh Emily and Rae, thank you so much for this interview. I have so much to say. Did a doctor actually tell you to have a gin and tonic and go and have sex?!?! Did that actually happen??? I had my own 'I'm not going to examine you when you're hysterical' which I talk about here https://emmasimpsonauthor.substack.com/p/whose-body-is-it-anyway but OMG??????? Seriously???? That doctor should be struck off - I have a special word for dismissive male gynae doctors. It begins with a c and as my friend says: 'if you haven't got one, or you are one, then get your mitts off mine'.
In the aftermath of intense grief from bereavement I threw myself into work - (I was also on maternity leave with my first child who had contracted meningitis and nearly died). I buried myself in activity. Back to work, moved house, got promoted, had another child, more work, moved house, transferred job, moved house, got promoted...you get the gist. My body exploded about 9 years ago, (initially with depression and anxiety) and then the physical deterioration followed. Like you say, Emily - so many 'unrelated' things, but which cannot be unrelated. I myself take the holistic angle, look after my lifestyle and diet, and no longer work in anything resembling a traditional career. Writing is now my life, as and when I can do it.
Yes the supermarket lights can be too bright, the sensory input overwhelming, or it can be intense pain and fatigue. New delights every few months. I probably had almost 2 years cumulatively off work over an 8 year period. The feeling of being worthless, unreliable, a let down, a liability, a flake, even though I was actually fucking brilliant at my job. Nonetheless I had to walk away. (Once forcibly and once by choice).
I also live on a different understanding of time - today is today. Tomorrow may be totally different. My actual today has been horrendous which is why I feel so connected to this subject right now in this moment. Needing to talk with those who understand.
I would love to collaborate and throw my spoons in the collective drawer every now and then. Today I have negative spoons, but it won't always be like that, and I'd love to be a spare spoon when others need them.
Much love to both and thank you for bringing such insight into this and bringing it to the fore. 🙏
Thank you for writing in, Emma, and I'm glad this came at a good time for you. I totally resonate with so many elements of your story, particularly the pushing and pushing at work, and then the decision to walk away despite knowing that you are "fucking brilliant" at your job, which I LOVE that you just OWN, and I really need to take a lesson on that from you!
I hope we can keep in touch. Right now I have an enormous backlog of interviewees for this series (which is both wonderful and terrible at the same time), but I hope we can speak in the future.
haha thank you!!! And you know what? I really was fucking good at my job!! And so are you!! It was wonderful to grow out of the self-deprecation of early-mid adulthood and realise that, but then to be struck with CI - it was not easy to hold onto at all. But in reflection, hell yes.
I would love to keep in touch - I might even have submitted something to you before but I'm honestly not sure! I'm not going anywhere anytime soon so yes let's stay in touch and I'd love to speak in due course. I don't yet understand the difference between subscribing and following on here, if you do one of those and then we'll def stay on each other's radar until the time is right?! Thank you for all that you do, look forward to connecting more x
Haha I also have no idea about following. But I think "subscribing" will do the trick :)
Sending empathy and I’d send a spare spoon if I could and if I had one. Hoping a virtual spoon helps a tiny bit.
oh I know you would, and I you. Yes it does, thank you. Virtual hugs right back at you my friend x
Hi Emma, thanks so much for your responses to the interview, and for sharing your story too, it means more to me than I can say. I'm so glad we've connected :-) And yes, unfortunately that is word-for-word what the gynaecologist said!
Also I’m interested on what the ‘auto immune protocol’ is - am going to spend some time today with Dr Google!!
UNBELIEVABLE!!! Yet sadly not. It’s always when we’re at our most vulnerable otherwise we’d take action. Lost for words.
Thank you Emily and Rae for this eye-opening and vulnerable article!
I was lucky enough to find a great therapist after I lost loved ones during covid, quit a job I burned out from, and released several layers of my old self. She told me that grief comes in various forms not just a loss of a loved one and that each loss comes with each processing of the grief cycle. So, each person, relationship, job, and identity that I lost since the start of covid needed its own processing of the grief which has compounded. The processing of all those cycles of grief overlapped with each other especially when they were happening one after another. Due to my therapist, I became aware that the layers of grief were a big part of my burnout.
Thank you to both of you, Emily and Rae, for bringing this conversation about grief to light here in Substack. None of us are taught how to process grief and as we all know, by the time we realize it, including myself, it has already manifested itself physically, mentally, emotionally, and spiritually. Thank you both for shining your light! You are both making a difference in the world with your writing and by being YOU!
I love the phrase "released several layers of my old self." Thanks for sharing your story, and I'm so glad you found a good guide. It's crazy to me how little we talk about "other" types of grief.
I totally agree, Rae, there is so much other types of grief, like loss of a belief system, mindset, lifestyle, energy, and others that we don't even acknowledge as a society. Everyone is walking around with unprocessed grief that they aren't even aware of.
Beautifully shared. Grief is not a problem to fix. It's an embodied experience that needs to be metabolized. Sadly, too many mental health professionals and care providers aren't trained in basic grief and loss literacy. This. Needs. To. Change.
Thank you, Grief Unleashed! Yes, I totally agree with you!! When I am driving and I see a poor, deceased animal on the side of the road, I feel the loss of that animal I never even met. That, too, needs a grieving process.
I agree, there needs to be more training and more specialists trained in grief counseling and therapy.
Thank you, and your therapist sounds amazing! I love what you share here -- it's clear you have so much insight into how grief shows up in your life, and how all those layers connect. Powerful xx
Hi Emily! Thank you! Yes, she is amazing! I am so lucky to have found her at a time I needed a therapist because I kept putting it off for so long. I learned that grief teaches us and gives us lessons about how to look within ourselves instead of looking outside of ourselves for love, comfort, soothing, and reassurance that we are going to be okay even though our losses can be deep so can our own well of self-love.
Another area where I think we don’t allow for grief is in the transition to motherhood. We focus so much on the gift of the child, we forget to honor the pieces of ourselves that are left behind that we may grieve.
Absolutely true. That one can be so complex because not only is grief not discussed, but any sense of grief is saddled with shame that you shouldn't be feeling grief.
Exactly!
I had this exact conversation with my 8-months pregnant friend a few weeks ago! It's been one of the most gorgeous parts of launching GriefSick -- that people tell me about all of their griefs. I think the grief that accompanies the transition to motherhood, and the transition to menopause, are really under-explored.
Such an important point Kim. Grief often gets triggered during life transitions as it can signal a loss of identity, relationships, income, title, security, etc. Grief is a normal, natural and healthy response to loss. What isn't healthy is our Westernized culture aversion to anything related to the so called dark and messy parts of life.
Agreed!
In awe of this process of going through so much pain and loss and discovering that you're grieving and then working through grief whilst simultaneously healing (to some degree) your body through diet. It makes so much sense. There are numerous accounts of dietary changes (specifically whole food, paleo, vegetarian, Mediterranean, and/or fasting diet combinations) curing many physiological and psychological issues, including cancer. Unfortunately, these accounts remain a "fringe" topic, often scorned by the Medical Industrial Complex.
I wonder if we couldn't all benefit from seeing all manner of loss as grief and learn how to navigate the grieving process to deal with it. I'm thinking specifically of the loss of childhood, or the loss of a close relationship, or the loss of vocation as we leave the workforce and enter retirement. The application for grief therapy is seemingly endless.
Finally, I'm learning more about how inadequate (and sometimes downright dangerous) female sexual healthcare is. Sometimes I think of the extremes (like FGM), but there is so much quiet violence in the everyday treatment of women in the healthcare field.
More to read and learn for sure...
Thanks for your thoughtful note, Teague. I agree that there needs to be way more discussion about grief in all the contexts you mentioned, and I think that starting and nurturing that discussion is part of Emily's mission now, to all our benefit!
Thank you, Teague, and yes, "quiet violence" is a great way of putting it. Understanding loss to be an inescapable part of life is very much part of my mission (well articulated, Rae!), and Francis Weller's work is a great place to start, if you're interested in a nuanced look at grief:
https://uk.bookshop.org/p/books/the-wild-edge-of-sorrow-rituals-of-renewal-and-the-sacred-work-of-grief-francis-weller/2901099
Thank you for sharing this enlightening letter.
I don’t know if I should feel happy or sad learning that the symptoms of ME/CFS (had to Google the abbreviation) fit my undiagnosed chronic illness perfectly.
I’ve been able to manage the symptoms with holistic approaches for years but it’s still very much a seasonal experience. Although, my symptoms could be a result of a combination of things and not only ME/CFS, like C-PTSD, PTSD, depression and being a highly sensitive introverted person on top of those disabilities.
Unfortunately, seeking diagnosis for chronic illness totally depletes my energy. The process is just too complex due to the overlapping symptoms of illnesses and incompetence of doctors.
But the worst aspect of all of this is absolutely the grief of loss—a quadruple whammy.
Hi Celesté, I'm so sorry you're in the place of loss and lack of diagnosis, I know it so well, it's so disorientating and painful. It sucks that doctors are so bad complex chronic illness. And yes, lots of things can contribute to fatigue too. As you may have seen in your Googling, the hallmark symptom of ME/CFS is Post Exertional Malaise, which is one thing that distinguishes it from other kinds of fatigue. ME Action is a trustworthy source of information https://www.meaction.net/learn/what-is-me/
I hope you find good support, whether from a doctor, holistic practitioners and/or other folks with fatigue or ME/CFS xxx
Thank you for sharing this valuable resource Emily and for your kind message. I appreciate it so much.
Thanks for writing, Celeste, and you are definitely not alone. There are also a couple other wise women with ME/CFS interviewed in this series (https://raekatz.substack.com/s/ladies-illness-library)--though only you can decide if reading more right now is helpful or hurtful (I have been in both places many times). I'm so sorry you have had to navigate the horrible maze of doctors, it really does feel pointless sometimes.
Also, sometimes my friend who has moderate/severe ME has the energy to come for a visit and it’s pure bliss to see a friendly face amid the isolation. We sit in the dark because we’re both light sensitive and talk quietly and with ‘low energy’ -- it’s the best day ever.
Thank you so much Rae for featuring Emily’s quietly powerful voice and vulnerability. Emily’s topic on grief is so incredibly important because there aren’t many spaces to talk openly about grief. I carry grief like a back-pack. I’m mostly bedbound and have lost too much and grief is just there everyday, it’s not something I can cry away, it’s there to be accepted and seen as part of my daily life. It seems less heavy to carry that way.
Hi Madelleine, thank you so much for sharing. I feel like people with Severe ME and housebound folks have so much wisdom to share on the topic of grief, and you're so right, "it's there to be accepted" (beautifully expressed). I feel a bit teary reading about your friend visiting and how you sit in the dark -- not because it makes me sad, because it fills me with joy, it's such deep intimacy of the kind that is hard to explain to someone who isn't disabled. It's the access intimacy that Mia Mingus writes of, right?
https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/
Exactly! I’ve gotten a very different perspective and deeper understanding of intimacy after becoming bedbound. There is so much vulnerability there, and sitting together in the dark and sharing exhaustion is very special.
I am also nearly moved to tears imagining the scene. Thank you so much for sharing.
1. I’ve grieved many things that aren’t a loved one dying. Vocation, hopes, dreams, the fading of relationships, the never ripening of relationships...
2. As a ‘praise junkie’ my first chronic illness was tough... locked in a cycle of perpetually disappointing people. In retrospect I realised I could focus on not disappointing myself. Despite it being an uphill battle I’m also the only person who is going to stay with me come what may, so there’s a peace there when I can find that place.
3. Haven’t been on holiday but I swear people who’ve had lived experience or witnessed it compassionately from up close reveal themselves in ways Emily describes. Its all so frictionless, if some kids kick a ball outside the park, noone thinks twice about kicking it back. There’s no judgement, no onerous sense of being burdened with care, you do your bit and everybody smiles and gets on with their lives.
I think the phrase "praise junkie" is just perfect, I'm going to remember that one. My hope for you and everyone with chronic conditions is to experience the type of vacation that Emily described, it does sound totally magical.
100% magical. I didn’t come up with praise junkie but I love it despite the stigmatising language.
Your second point resonates with me so much, Michelle. "I realised I could focus on not disappointing myself", YES. I hadn't thought of it that way before. I sometimes talk about how one of the hardest, and most liberating, parts of becoming disabled was "becoming disappointing to others". As a woman, placed since birth in that self-sacrificing, caring role, to disappoint others felt like the most radical thing I could do.
Yes, so much. Reducing stress is important but its hard to avoid the stress of disappointing others’ hopes on top of your own. It still hurts, but not as much or as long as disappointing myself.
We are near 20 years into an autoimmune journey. Often I thinking numbing, a measure of trauma, and sadness go along. Allowing grief over loss and pain, intuitively sounds absolutely on point.
Sending tons of love
Sending hugs to you. So with you on the numbing, the trauma, the sadness. Allowing the grief in can be transformative, but sometimes we don't have the capacity to let it in, and that's ok too (I couldn't have given this interview, or set up GriefSick, until very recently). Wishing you gentleness as you navigate this difficult terrain xx
I grieved my previous life in which I was slowly fading out, dying out, in a perfect couple with nice children, a large house, a challenging job and feeling lonely and desperate. I grieved a "normal" life to embrace a life of being myself.
I grieved being a healthy person while going through cancer treatment.
I grieved one of my daughters going through a really hard time the past three years and somehow feeling that I failed to protect her.
Thank you for your article.
Thanks (again) Genevieve, the diversity of griefs we can have is really wide. Emily helped me see that better.
Loved this exchange. The line 'no one told me this was grief ' reminds me of a quote by C.S. Lewis who shared 'no one told me that grief felt so much like fear. ' following the death of his beloved wife. I am new to this community and am slowly finding my way. I recently published a book called Grief Unleashed that traces my own experience with a life shattering loss. I am now a grief coach and death educator and am deeply passionate about helping people re-imagine a new relationship with life losses. I have so much to share and am grateful for this community 🙏.
Wow, I love that C.S. Lewis quote, thanks for sharing it. Totally true.
So glad to have you hear, and I definitely hope you can connect with Emily! It sounds like you two are working on some of the same topics :)
Hi Rae and Emily, thank you SO much for this. I have premenstrual dysphoric disorder (PMDD), which means that for 27 years (since the age of 11) I lost half of every month to intense emotions and low mood. I was only diagnosed earlier this year, and now have a treatment plan in place and seem to have found a better life balance. I have grieved deeply for every job opportunity, relationship and friendship I lost due to my condition. My therapist first explained to me that you can grieve for lost experiences, as well as people. It was a profound moment and I allowed the tears to flow for many years until they abated (a little!). I'm also a highly sensitive person so have this to contend with too, although I wouldn't change it for the world. I'm just starting out as a writer and am new to Substack, so thank you so much Rae for creating this fantastic, inspiring, helpful resource.
Thanks for being here, Amy, and for sharing a bit of your story. While I am glad you have some clarity now, I am so sorry it took that many years to get a diagnosis (and it's horrifying how common this is). I also felt like my mind was blown when I first heard about grief in the context of chronic pain/illness. Looking forward to keeping in touch here on Substack!
Thank you Rae, that would be amazing! I’m looking forward to writing my own pieces very soon 😊
Hi Amy, I'm sorry for all that you've lost, and am so glad you finally have good treatment. Your therapist sounds wonderful, it's so important to have guides in this grieving journey, people who can explain, give language and context. And hi fellow HSP! I think there's a lot of us in the world of chronic illness...
Thanks, Emily. Yes, finding my amazing therapist back in 2018 was life-changing. And realising that acceptance of who you are or have become is key too. Thanks again for this article, your journey really resonated with me.
I’ve subscribed to your page and look forward to reading your writing as and when you feel ready to share.
Thank you Amber, this means a lot to me! I've subscribed back. Great to meet you on here.
Prior to getting Covid, I had done a fair share of anticipatory grieving for my mother, who has Alzheimers. Witnessing her personality/identity dissolve on the daily was excruciating.
Once I realized I have Long Covid, there were a few times when it hit harder, and I gave myself the space to grieve the loss of who I had been. Honestly, though, a lot of that loss happened during the intense time compression of caregiving.
Recognizing and honoring that loss has been the key for me to shift into Acceptance first (okay, here I am), then into curiosity (so what can I do now)? I'm definitely in a much better headspace now.
Hi Victoria, thank you for sharing -- caregiver grief combined with Long Covid grief, that must have been intense. I love that you have recognised and honoured the losses, and so great that you're in a better headspace now. It sounds like you really embraced and directed your healing from those griefs, which I find so admirable xx
I was so excited to see you reference Alice Wong and Josie George! I love their work. Can't wait to look at the other recommended books too. And thank you for starting this, I really resonated with the first post and I'm thinking about sharing with my mom or friends too.
Thanks Katie, I'm so glad it resonated with you, and thank you for potentially sharing more widely too xx
Superb article as always. I did not know that was I was experiencing at the time of losing my job, my career, my income, my life as I knew it due to chronic illness was grief. I only realised once I’d moved through it and started to hear others in the community talk about it. It was an incredibly difficult period of time. Thanks for the recommendations on memoir, I’ve ordered a couple 🙏 my favourite genre x
Thanks Katie, I think that's a common journey for us -- to be located in our grief by other chronically ill folks. One of the many ways we care and support each other! Memoir is my favourite genre too :-)