#3: Quarterly, Nov '23

A post-launch update on where GriefSick is at

I’m Emily, she/her, chronically ill (primarily with ME/CFS), chronic illness advocate,
grief-tender, regenerative organisational designer, coach and writer. Read about my journey in this interview, and about GriefSick in Edition #1.

AI generated art (DALL-E)

Reflections since launching GriefSick

I am noticing that

• People tell me their griefs. A close friend hesitantly reveals her matresence grief. A stranger DMs me about her chronic illness grief. A taxi driver speaks of his recent bereavement as we drive through Dartmoor. Once the door is prised open, all the sorrows come tumbling out. It feels precious; I am honoured every time someone shares their story with me

• Launching GriefSick brought up some issues with visibility, causing old patterns to re-surface. Unknowingly, I had breached my nervous system capacity, despite proceeding so slowly (trauma practitioners call it “titration”), taking over two years to progress GriefSick from idea to launch. I have a lot of nervous system expansion tools and I found my way back to safety, which I suspect I will have to keep doing in the course of this work.

I am learning that

• To hold the grief of others, I need to be in relationship with my own. I have been actively tending to my own grief through training in grief tending (see below). Since October, my grief for Palestine feels most present, the sorrow that’s already waiting in my throat when I arrive at grief tending circles

• Tending to grief requires us to submerge into our painful depths, and it requires us to tend to play and joy. Drawn to heaviness and intensity, I’m confronted by how exposing it feels to cultivate silliness

• Most potential contributors to GriefSick need a bit of scaffolding and support. A chat to root around and find the story, and help with sensing into when they’re writing from the wound, not the scar. What to share, what not to share? This makes me part editor, part coach, a role I’m still figuring out.

A selection of launch feedback

This newsletter has over 400 subscribers now, with barely any promotion, and no posts since the launch in early September. This feedback goes some way towards explaining why:

• “Oh my word. I think I’ve been waiting… maybe my whole life for this? It sounds utterly magnificent”

• “Thank you for providing a space for us, articulating so thoughfully and necessarily what this means”

• “GriefSick is what I needed when I was rethinking and resourcing myself for a profoundly changed life, identity, routine, skillset, trajectory. It will be top of the pile of the resources I send on to the (far too many) people getting in touch to say they 'just aren't recovering like they'd hoped to' from Long Covid, as the numbers keep rising”

• “I wish GriefSick had existed when I had Long Covid. I was sick for 14 months, and experienced the loneliness, the isolation, the depression and the grief that chronic illness brings. I didn’t know I was experiencing grief, I didn’t have the words to explain what I felt. One day I read a tweet by Emily about chronic illness grief and it made it all make sense. She had gifted me the words to be able to talk about it and process it”

• “This is so refreshing - I like the language you use about witnessing rather than fixing”

• “As someone with chronic illness I really appreciate you putting into words what many of us carry around in our heads and hearts. I know there will be days when I don't want to engage with this content so thank you for giving permission for this. And I know there will be days when this is just what I need”

• “This is certainly the newsletter I wish existed years ago, when I started dialysis, and went through an intensely difficult period of grief, for which I received zero support… I'm happy this exists”

• “This looks incredible — such an important yet often taboo topic”

• “As a person with chronic pain and autoimmune disease, I am excited to find the sanctuary of the community you are building”

• “My sister is experiencing some serious chronic illness grief although we didn’t know that term to describe it. I have gone and reserved some books from the inspirations list from the library and [am] looking forward to reading them”

• “I just wanted to thank you for naming the grief embedded in chronic illness. I have a cancer diagnosis and feel that grief all the time, though sometimes I haven’t recognised it as grief, exactly”

• “I loved reading this, I relate to it so strongly and it helps me feel my power and value I have as an ill person, rather than feeling like the sickness takes away the power”.

I welcome challenging feedback too! Comment below or email me at emily@emrosebaz.com.

What I’ve been doing

• Responding to every single person who commented and contacted me after I launched GriefSick

• In case you missed it, being interviewed by

  Rachel Katz
  : “No one ever said to me, “this is grief". I shared more than I ever have before about my own chronic illness story, alongside talking about grief, cyclical living, crip time, disabled wisdom and organisational design

• Training in grief tending via two courses: Grief Tending in Community with Apprenticing to Grief and Entering the Healing Ground: Grief Ritual Leadership Training with Francis Weller

• Learning how to be an editor of a publication that deals with challenging topics, starting with designing a trauma-informed GriefSick contributor process. Logistically, this means a rough CRM, draft contributor guidelines and very optional deadlines (because, chronic illness). Somatically, this means offering grounding practices at the start of interviews, and checking in with people throughout the discussion to sense if we need a break or a quick practice to regulate

• Having initial conversations with ten potential contributors or interviewees. This is proceeding at a leisurely pace, because, well, we’re all sick. If you’re interested in collaborating in some way, please fill in this short form (it takes 5 minutes to complete)

• Collaborating with

  Navigating the Wilderness
  on a Chronic illness x Grief zine, thank you to everyone who submitted such gorgeous art, poetry and prose

• Setting up a GriefSick sub-brand, GriefSick Chronicles, as a dedicated space to publish interviews

• Creating holding Twitter, Instagram and TikTok accounts, while I figure out what GriefSick should be on social media. I want people to find GriefSick, but I don’t have the desire or capacity to create content. It also turns out that running a brand account is very different to running a personal account. I have a lot to learn. As an ancient millenial and video refusenik, I was surprised by how much I enjoyed making the two initial TikTok videos, so perhaps there’s a role for this in GriefSick’s future

• I’ve also been moving house and navigating a lot of health stuff (as always), so I’m giving myself grace for not publishing an edition for nearly three months.

What I’ve been reading

• On Immunity: An Inoculation, Eula Biss (immune systems, vaccinations and the relationship between the individual and the collective)

• Active Hope, Joanna Macy (facing climate grief)

• A Celtic Book of Dying: The Path of Love in the Time of Transition, Phyllida Anam-Aire (completely bonkers, but interesting nonetheless on Celtic approaches to death and dying).

Coming up next

• Rachel Katz
  interviewed me for a piece on chronic illness in Vox, and the Post-Exertional Mayonnaise pod is interviewing me next week. I’ll share when they’re both published

• A beautiful interview with a person who has ME/CFS, about how they designed a community ritual to be witnessed in their chronic illness grief, and the impact that it had on them

• An essay about grief, sickness, descent and patience, and a zine with

  Navigating the Wilderness
  , both likely published in the new year.

It’s useful for me to keep a record of GriefSick’s progress — I’m imagining a post like this maybe every 3 months. Are these kinds of updates interesting to you or should I stick them in a Google Doc instead? Let me know yes/ no in the comments below.

Fill in this short form if you’d like to guest-write an edition of GriefSick, be interviewed for GriefSick or collaborate in another way.

Email me at emily@emrosebaz.com if you’d like to commission me to write for your publication, speak at your event, invite me on your podcast or send me some feedback.

I suspect that GriefSick is not for everyone, all of the time. There have been points in the past eight years of my illness where I could not have engaged with this newsletter. Maybe that’s where you are now, and if so, I encourage you to protect yourself by not subscribing.

GriefSick is free. But if you enjoyed this post, please consider contributing to the Ko-Fi. 100% of KoFi payments go towards compensating GriefSick guest writers and illustrators.