An interesting and important conversation, thank you. I’ve seen it discussed as ‘disenfranchised grief’ - or grief when there isn’t a socially acknowledged or condoned mourning ritual eg the things there aren’t really cards for: chronic illness, heartbreaking disappointments, people missing who may not be dead etc.
Oh wow thanks Michelle, I'd not heard of disenfranchised grief before, what a useful concept! You've given me a lot to research and ponder for how to fold this into GriefSick, thank you! I see we are fellows of Rae's interview series (loved yours!) -- mine will be published in October :-)
Thank you Emily, I look forward to seeing what direction you take this in.
I feel my illness grief support needs are fairly well met, by depending on particular Facebook support groups that it took me some time to come across. I agree that taking it more mainstream could help people. There are ideas already out there that are the answers people look for, it's just not always obvious how to access them.
I do wish that there was more film and TV with people with chronic illness, even if it's just incidental rather than part of the main story. (As long as it feels representative rather than a caricature.)
There are little known books and music that deal with illness including grief about it... maybe we could compile a list in a Google doc? I know of a couple of podcasts too. Maybe one way to get it more mainstream is by boosting what already exists? I might be able to help crowd source a list via my networks.
I'm glad you said the thing about being unpolished and imperfect. I find that easy in some contexts, hard in others - blogs are a space I find it harder. I hope that stating it makes it easier for you to not be perfectionistic in this space.
Lior thank you so much for your considered feedback, as always! I'm so glad you feel supported in your illness grief, and agree that there are pockets of really helpful things out there, but the path to finding them is so unclear.
I'm so with you on TV and film representation, good representation where illness is just a part of the characters life, not their only "personality" trait or motivation, or treated as inspiration porn/ burden for other characters.
And thank you, yes I stated the thing about being unpolished and imperfect to hold myself to account for not being perfectionistic about it!
I have some chronic illness grief resources, incl. podcasts and books, in Edition #2 but actively looking for more! Music sounds very interesting!
I mean, it would be incredible to crowd source some more resources, thank you so much for offering, but I really don't want to use up your spoons! I'll Whatsapp you and let's see if there's a good process that I can help hold, so it's not all on you xx
Oh wow that's a great list! Lots of what I was thinking of was on there. I've almost finished Sick by Porochista Khakpour. I didn't love it, but it was validating hearing how much of a struggle it was for her to get a diagnosis - that's the whole book, her struggle to get a diagnosis, and what happened along the way.
Maybe I could just refer people to your list, and they could comment on further resources they know about?
There are people I know who are creating good stuff, but don't have the energy to promote it. (Self published poetry, music they put on YouTube/soundcloud, art that they only share on social media because they can't handle running a website.) Sickness grief is a theme that comes up a lot. There's so much talent in the chronic illness community. Some of it does feel unpolished, because of people's limitations. But I guess it's a sort of folk culture/sub culture? I feel it should be elevated and celebrated.
And maybe there's something in here in valuing voices that don't fit in with expectations of polishedness? I'm still figuring this out.
Yes it would be amazing if people could comment, and then I'll edit the list as they do. I also agree that sharing spoonie talent would be awesome (we're so often shut out of mainstream channels, like publishing industry). Maybe there's some hashtags I could include in the list if people want to explore?
Hi Emily - I have just come across this, in that way that I think we are meant to find people sometimes. I relate to this wholeheartedly and from several angles. I have been living with chronic illness for several years - CFS/ME, fibro, MCAS, and for the last 2 years chronic urticaria which is utterly debilitating at times. I have been medically retired from a 20 year career as an air traffic controller, and voluntarily left my subsequent senior leadership role, and closed down my own coaching practice due to my health limitations. I wrote a piece about grieving that which we have lost (apart from through bereavement) not long ago https://open.substack.com/pub/emmasimpsonauthor/p/ending-are-always-the-hardest?r=291wza&utm_campaign=post&utm_medium=web
I wholeheartedly believe that my CI was triggered through the trauma of grief when my brother died tragically and unnecessarily (hospital malpractice) 16 years ago. Everything has snowballed since then and I cannot find my way out. I live with the rollercoaster like so many of us do. There are good days, but the bad days are really bad. Today is one.
Hi Emma, I see we are kindred spirits -- chronically ill writers who love wild swimming! Thank you for sharing your story so generously, I loved your post, particularly about how there's no hierarchy in grief -- it's true, and it's hard to hold onto. I'm so sorry about your brother, and all that you have gone through with your health, and that today is a bad day. Sending hugs! I'd love to collaborate too, look forward to hearing from you xxx
Thank you lovely - I'll ping you a quick email now with my contact details. I'm not in a place to write much more today but we can come back to it if that's ok? xx
This is really interesting. I'm an ex-GP and current university medical school educator. In the 3rd year, we teach the students about living with long term conditions and like you have found good quality, patient-centred resources hard to come by. I think this blog could become a useful resource for them. Thanks, Lisa Finnikin.
Thanks so much, Lisa, I'm thrilled that GriefSick could become useful in helping medical students understand what it's like to live with chronic illness (and I'm really glad that's part of your syllabus, that's wonderful!).
There's a lot of well-written, well-researched books about living with chronic illness, the sociology of chronic illness and how chronic illness and the medical system interact (see Edition 2 https://griefsick.substack.com/p/2-inspirations). I would be beyond happy if every doctor-in-training read these two:
- The Invisible Kingdom: Reimagining Chronic Illness by Megan O’Rourke
- Unwell Women: A Journey Through Medicine and Myth in a Man-Made World by Elinor Cleghorn
More broadly, I'm interested in what good quality and patient-centred looks like from the perspective of medical education? Chronically ill people share so much on social media, your students could check out hashtags like #spoonie on TikTok, Instagram etc. In my opinion, this is good quality, patient-centred information, as it's straight from chronically ill people.
In my professional life, I'm a user researcher and designer, I work as part of the Bright Harbour collective -- we specialise in genuine co-creation, working with sensitive subjects and underrepresented people. If a conversation about co-creating a syllabus with chronically ill people would interest you, let us know https://www.brightharbour.co.uk/
I found this from Twitter and really interested (if a little scared) to read it. About six months ago I was diagnosed with stage 4 breast cancer. I've been lucky enough not to have any side effects from treatment so far so I can live an almost normal life (regular hospital visits aside). But it's obviously had a huge impact on my mental health. I'm struggling to work out where my place really is - I don't at all relate to people with early stage cancer who will likely be cured, but I also feel a bit like a fraud amongst people who are more disabled day to day. I've seen people describe getting this diagnosis as both grieving for the person you were before as well as for the future life you aren't going to get, which I think is very accurate.
Just using this space to share my thoughts as, like you say, there aren't many places to do so.
Hi Natalie, I'm so sorry to hear about your diagnosis, the effect on your mental health, the feeling of not relating to others, and the grief for who you were before, and who you imagined you'd become. That's a lot to carry, on top of the sheer amount of admin that comes with serious illness. Thank you so much for sharing, I wish there were *tons* of places to put these feelings. I'm curious -- does your cancer service/ cancer charities provide counselling, and if so, does the counselling hold space for these complex feelings?
I get the scariness of GriefSick! It will always be here, if and when you feel ready. I don't think it's for everyone, all of the time, and there have been points in my journey where I couldn't have engaged with it myself, let alone write it.
Thank you. There is counselling on offer but I haven't actually tried it yet - I'm a bit reluctant not exactly sure why. Something about voicing my fears maybe when I'm quite happy being in denial a lot of the time! I've also got a 3 year old and 9 month old so it's tricky to find the time. I've found Facebook groups to be a really great source of support though, where people do just get it.
I know what you mean -- I have had therapy, but tbh the most helpful stuff has always come from other chronically ill people. So glad the Facebook groups are a home of support.
An interesting and important conversation, thank you. I’ve seen it discussed as ‘disenfranchised grief’ - or grief when there isn’t a socially acknowledged or condoned mourning ritual eg the things there aren’t really cards for: chronic illness, heartbreaking disappointments, people missing who may not be dead etc.
Oh wow thanks Michelle, I'd not heard of disenfranchised grief before, what a useful concept! You've given me a lot to research and ponder for how to fold this into GriefSick, thank you! I see we are fellows of Rae's interview series (loved yours!) -- mine will be published in October :-)
There’s space for GriefSick as a specific kind of disenfranchised grief, looking forward to reading more.
Thank you Emily, I look forward to seeing what direction you take this in.
I feel my illness grief support needs are fairly well met, by depending on particular Facebook support groups that it took me some time to come across. I agree that taking it more mainstream could help people. There are ideas already out there that are the answers people look for, it's just not always obvious how to access them.
I do wish that there was more film and TV with people with chronic illness, even if it's just incidental rather than part of the main story. (As long as it feels representative rather than a caricature.)
There are little known books and music that deal with illness including grief about it... maybe we could compile a list in a Google doc? I know of a couple of podcasts too. Maybe one way to get it more mainstream is by boosting what already exists? I might be able to help crowd source a list via my networks.
I'm glad you said the thing about being unpolished and imperfect. I find that easy in some contexts, hard in others - blogs are a space I find it harder. I hope that stating it makes it easier for you to not be perfectionistic in this space.
Well done and good luck!
Lior thank you so much for your considered feedback, as always! I'm so glad you feel supported in your illness grief, and agree that there are pockets of really helpful things out there, but the path to finding them is so unclear.
I'm so with you on TV and film representation, good representation where illness is just a part of the characters life, not their only "personality" trait or motivation, or treated as inspiration porn/ burden for other characters.
And thank you, yes I stated the thing about being unpolished and imperfect to hold myself to account for not being perfectionistic about it!
I have some chronic illness grief resources, incl. podcasts and books, in Edition #2 but actively looking for more! Music sounds very interesting!
https://griefsick.substack.com/p/2-inspirations
I mean, it would be incredible to crowd source some more resources, thank you so much for offering, but I really don't want to use up your spoons! I'll Whatsapp you and let's see if there's a good process that I can help hold, so it's not all on you xx
Oh wow that's a great list! Lots of what I was thinking of was on there. I've almost finished Sick by Porochista Khakpour. I didn't love it, but it was validating hearing how much of a struggle it was for her to get a diagnosis - that's the whole book, her struggle to get a diagnosis, and what happened along the way.
Maybe I could just refer people to your list, and they could comment on further resources they know about?
There are people I know who are creating good stuff, but don't have the energy to promote it. (Self published poetry, music they put on YouTube/soundcloud, art that they only share on social media because they can't handle running a website.) Sickness grief is a theme that comes up a lot. There's so much talent in the chronic illness community. Some of it does feel unpolished, because of people's limitations. But I guess it's a sort of folk culture/sub culture? I feel it should be elevated and celebrated.
And maybe there's something in here in valuing voices that don't fit in with expectations of polishedness? I'm still figuring this out.
Yes it would be amazing if people could comment, and then I'll edit the list as they do. I also agree that sharing spoonie talent would be awesome (we're so often shut out of mainstream channels, like publishing industry). Maybe there's some hashtags I could include in the list if people want to explore?
Hi Emily - I have just come across this, in that way that I think we are meant to find people sometimes. I relate to this wholeheartedly and from several angles. I have been living with chronic illness for several years - CFS/ME, fibro, MCAS, and for the last 2 years chronic urticaria which is utterly debilitating at times. I have been medically retired from a 20 year career as an air traffic controller, and voluntarily left my subsequent senior leadership role, and closed down my own coaching practice due to my health limitations. I wrote a piece about grieving that which we have lost (apart from through bereavement) not long ago https://open.substack.com/pub/emmasimpsonauthor/p/ending-are-always-the-hardest?r=291wza&utm_campaign=post&utm_medium=web
I wholeheartedly believe that my CI was triggered through the trauma of grief when my brother died tragically and unnecessarily (hospital malpractice) 16 years ago. Everything has snowballed since then and I cannot find my way out. I live with the rollercoaster like so many of us do. There are good days, but the bad days are really bad. Today is one.
https://emmasimpsonauthor.substack.com/p/whose-body-is-it-anyway
Thank you for bearing witness to this. Thank you for knowing. I'd love to collaborate/contribute. I'll email you xx
Hi Emma, I see we are kindred spirits -- chronically ill writers who love wild swimming! Thank you for sharing your story so generously, I loved your post, particularly about how there's no hierarchy in grief -- it's true, and it's hard to hold onto. I'm so sorry about your brother, and all that you have gone through with your health, and that today is a bad day. Sending hugs! I'd love to collaborate too, look forward to hearing from you xxx
Thank you lovely - I'll ping you a quick email now with my contact details. I'm not in a place to write much more today but we can come back to it if that's ok? xx
Of course! We proceed at the pace of spoons xxx
This is really interesting. I'm an ex-GP and current university medical school educator. In the 3rd year, we teach the students about living with long term conditions and like you have found good quality, patient-centred resources hard to come by. I think this blog could become a useful resource for them. Thanks, Lisa Finnikin.
Thanks so much, Lisa, I'm thrilled that GriefSick could become useful in helping medical students understand what it's like to live with chronic illness (and I'm really glad that's part of your syllabus, that's wonderful!).
There's a lot of well-written, well-researched books about living with chronic illness, the sociology of chronic illness and how chronic illness and the medical system interact (see Edition 2 https://griefsick.substack.com/p/2-inspirations). I would be beyond happy if every doctor-in-training read these two:
- The Invisible Kingdom: Reimagining Chronic Illness by Megan O’Rourke
- Unwell Women: A Journey Through Medicine and Myth in a Man-Made World by Elinor Cleghorn
More broadly, I'm interested in what good quality and patient-centred looks like from the perspective of medical education? Chronically ill people share so much on social media, your students could check out hashtags like #spoonie on TikTok, Instagram etc. In my opinion, this is good quality, patient-centred information, as it's straight from chronically ill people.
In my professional life, I'm a user researcher and designer, I work as part of the Bright Harbour collective -- we specialise in genuine co-creation, working with sensitive subjects and underrepresented people. If a conversation about co-creating a syllabus with chronically ill people would interest you, let us know https://www.brightharbour.co.uk/
I'm so glad a friend led me to you. Reading the words of others who are also griefsick makes me feel so seen. Thank you.
Thanks Jill, I'm so glad GriefSick resonates with you xx
I found this from Twitter and really interested (if a little scared) to read it. About six months ago I was diagnosed with stage 4 breast cancer. I've been lucky enough not to have any side effects from treatment so far so I can live an almost normal life (regular hospital visits aside). But it's obviously had a huge impact on my mental health. I'm struggling to work out where my place really is - I don't at all relate to people with early stage cancer who will likely be cured, but I also feel a bit like a fraud amongst people who are more disabled day to day. I've seen people describe getting this diagnosis as both grieving for the person you were before as well as for the future life you aren't going to get, which I think is very accurate.
Just using this space to share my thoughts as, like you say, there aren't many places to do so.
Hi Natalie, I'm so sorry to hear about your diagnosis, the effect on your mental health, the feeling of not relating to others, and the grief for who you were before, and who you imagined you'd become. That's a lot to carry, on top of the sheer amount of admin that comes with serious illness. Thank you so much for sharing, I wish there were *tons* of places to put these feelings. I'm curious -- does your cancer service/ cancer charities provide counselling, and if so, does the counselling hold space for these complex feelings?
I get the scariness of GriefSick! It will always be here, if and when you feel ready. I don't think it's for everyone, all of the time, and there have been points in my journey where I couldn't have engaged with it myself, let alone write it.
Thank you. There is counselling on offer but I haven't actually tried it yet - I'm a bit reluctant not exactly sure why. Something about voicing my fears maybe when I'm quite happy being in denial a lot of the time! I've also got a 3 year old and 9 month old so it's tricky to find the time. I've found Facebook groups to be a really great source of support though, where people do just get it.
I know what you mean -- I have had therapy, but tbh the most helpful stuff has always come from other chronically ill people. So glad the Facebook groups are a home of support.
Welcome, Emily. This topic is sorely needed to be mined and put out front. Looking forward to reading more and maybe collaborating at some point.
Check out my post this past week on holding space for caregiver grief. Really glad you’re here 💛
https://open.substack.com/pub/longcovidandme/p/20-more-years-please?r=o3zsi&utm_medium=ios&utm_campaign=post
Hi Amy, thanks so much for your kind words. Your post on caregiver grief is absolutely beautiful xxx
Thank you! ☺️