Welcome to GriefSick

A newsletter that explores and bears witness to the grief of chronic illness.

I’m Emily Bazalgette, she/her, chronic illness advocate, grief tender, writer, regenerative organisational designer, coach and facilitator. I have been sick for eight years with a collection of chronic illnesses, including ME/CFS. Read more about my story in this interview.

Chronic illness grief is a painful and common experience that lacks language, awareness and recognition. We grieve the loss of identity, careers, relationships, hobbies, lifestyles, homes, safety, bodily autonomy, dreamed-of futures. Chronic illness grief can also include the griefs in life (for example, bereavement or divorce) that may impact on chronic illnesses through trauma.

I believe that we need field-building, language and awareness around chronic illness grief, and that chronically ill people deserve to be witnessed in their grief (witnessed, not fixed). This newsletter is my way of taking a first step toward these ambitions. Read more about why talking about chronic illness grief is important in Edition #1, or you can catch me in this podcast episode or this video.

@grief_sickWhy I started GriefSick, a Substack newsletter that explores and bears witness to the grief of #chronicillness #mecfs griefsick.substack.com

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Why the name?

GriefSick is a confronting name, combining two things that tend to repel people: grief and sickness. I played around with softer names for this newsletter, but I kept coming back to GriefSick because I believe that grief and illness are vital, transforming, often brutal states, taking us to the very core of human experience. That’s the representation I hunger for, something that is raw and true. Read more about the inspirations behind GriefSick in Edition #2.

Why subscribe?

My hope is that you will feel witnessed by GriefSick, discovering new and unusual ways of looking at chronic illness grief.

You’ll receive newsletters of my working-out-loud through different aspects of chronic illness grief. Editions will include essays, interviews, questions and tensions and inspiration. They won’t be polished or perfect and I will publish sporadically, when my energy allows. If you’d like to support GriefSick further, please do contribute to GriefSick’s Ko-Fi. 100% of KoFi payments go towards compensating GriefSick illustrators.

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.

Fill in this short form if you’d like to illustrate an edition, be interviewed or collaborate in another way.

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

What I bring to GriefSick

• My eight years of chronic illness and related griefs, which you can read more about in this interview

• Six years of reading widely and deeply around chronic illness, disability and grief (see Edition #2)

• Six years of emotional and spiritual work. I know this work will deeply challenge me and I feel ready to hold this enquiry for myself and with others

• My commitment to disability justice, collective liberation and anti-oppression

• My professional skills in systems design, horizontal organising and coaching, all of which bring lenses that I believe are useful in the context of chronic illness and grief work: deep collaboration, seeing connections, tolerating uncertainty, a belief in wholeness, seeking consent and an emphasis on process rather than outcome

• I also bring privilege and its attendant biases: I am white, cisgender, heterosexual and have generational wealth. I have invisible illnesses: a disadvantage in many ways, but I pass as abled in public. I am not the “leadership of the most marginalised” (see disability justice principles above).

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