#2: Inspirations

The inspirations for GriefSick across chronic illness, addiction, disability justice and grief

I’m Emily, she/her, chronically ill (primarily with ME/CFS), chronic illness advocate, regenerative organisational designer, coach, facilitator and writer. Read more about my story in this interview.

GriefSick rests on the shoulders of brilliant writers, artists and creators. Below is a map of what’s inspired me across the fields of chronic illness, addiction, disability justice and grief. Browse all book recommendations in Griefsick’s Bookshop.org profile and see Edition #1 for an introduction to this work.

AI generated art (DALL-E)

Chronic illness grief

There isn’t much that is specifically focused on chronic illness grief, although the experience of chronic illness grief is mentioned or alluded to in a few of the chronic illness books below. However:

• I talk about my journey with chronic illness grief in this interview with

  Rae Katz
  in her brilliant newsletter
  Inner Workings
  and in this podcast interview about psychedelics, collective grief and surrender with the lovely Daniel Moore of Post Exertional Mayonnaise

• The Grieving Project is a multi-media spoken word musical about chronic illness grief by artist and playwright Lisa Sniderman (also known by her artist name, Aoede)

• Lucy Webster
  writes movingly about disability grief in this post

• Jayne Mattingly
  is currently writing a book, Body Grief, for publication by Penguin Random House in 2025.

Chronic illness

Some of these books are straight-up memoir, others are more scholarly examinations of how chronic illness is constructed in medicine and culture, and some contain both. If I could only read five, I’d choose The Undying, A Still Life, Ill Feelings, Everybody, On Being Ill and The Invisible Kingdom, for the quality of writing and analysis. Browse the list in Griefsick’s Bookshop.org profile.

Books

• Some of Us Just Fall: On Nature and Not Getting Better, Polly Atkin (Ehlers Danlos Syndrome and haemochromatosis, resisting illness narratives of cures or improvement, experiencing nature when chronically ill)

• The Undying: A Meditation on Modern Illness,

  Anne Boyer
  (exploring how illness is constructed, narrated and experienced in the modern world through the author’s cancer diagnosis, weaving in the stories of Audre Lorde, Kathy Acker and Susan Sontag)

• Unwell Women: A Journey Through Medicine and Myth in a Man-Made World, Elinor Cleghorn (unpacking the roots of medical misogyny)

• I Am, I Am, I Am: Seventeen Brushes With Death, Maggie O’Farrell (an examination of near-death experiences, including a serious childhood illness that has had lifelong effects)

• A Still Life: A Memoir,

  Josie George
  (resisting illness narratives of cures or improvement, finding meaning and beauty in the stillness of life with chronic illness)

• Ill Feelings, Alice Hattrick (a memoir about living with ME/CFS and an examination of women’s writing about illness, including Virginia Woolf and Emily Dickinson)

• Moving Mountains: Writing Nature through Illness and Disability,

  Louise Kenward
  (essay anthology that re-imagines nature writing through the experience of chronic illness)

• A Flat Place, Noreen Masud (a beautiful, desolate memoir about complex PTSD that moves back and forth between Lahore, Pakistan, and the UK’s flat places)

• Disturbing the Body: Speculative Memoir about Disrupted Bodies, Verity Holloway, Irenosen Okojie, Chikodili Emelumadu, Louise Kenward, Lauren Brown, Abi Hynes, Natasha Kindred, Nina Fellows, Marion Michell, Beverley Butcher (essay collection)

• Empire of Pain: The Secret History of the Sackler Dynasty, Patrick Radden Keefe (chronic pain, addiction, the medical industrial complex)

• Everybody: A Book about Freedom, Olivia Laing (bodies, oppression, liberation and Weimar Germany)

• Giving up the Ghost and Mantel Pieces, Hilary Mantel (both contain explorations of Mantel’s experiences of endometriosis and medical misogyny)

• Run Towards the Danger: Confrontations with a Body of Memory, Sarah Polley (life after serious head injury)

• The Lady's Handbook For Her Mysterious Illness,

  Sarah Ramey / Wolf Larsen
  (under-researched chronic illnesses, systems biology, medical misogyny)

• The Invisible Kingdom: Reimagining Chronic Illness, Megan O’Rourke (the autoimmune diseases epidemic, systems biology, medical misogyny)

• Illness as Metaphor; and Aids and its Metaphors, Susan Sontag (cancer, tuberculosis and AIDS and the language and metaphors that obfuscate illness)

• First, We Make the Beast Beautiful: A new conversation about anxiety,

  Sarah Wilson

• On Being Ill, Virgina Woolf (this 1925 essay is still so relevant on the loneliness and stigma of chronic illness – Woolf had myriad health problems, including bipolar disorder)

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

On my list to read

• Who Is Wellness For?: An Examination of Wellness Culture and Who It Leaves Behind,

  Fariha Róisín

• Sick: A Memoir,

  Porochista Khakpour

• The Cancer Journals, Audre Lorde

• Sick and Tired: An Intimate History of Fatigue, Emily K. Abel

• Between Two Kingdoms: What almost dying taught me about living,

  Suleika Jaouad
  (thank you
  Martha Adams
  for the recommendation).

Magazines/ zines

• Ache

• SICK, founded & edited by Olivia Spring and designed by Kaiya Waerea

• Your Life is Not Over: A Book of Apocalypses and How to Survive Them, Fiona Robertson.

Newsletters

Body Grief

,

How To Cure A Ghost

,

Inner Workings

,

bimblings

,

The Impairing Curse

,

Resourced with Fanny Priest

,

The Disabled Feminist

,

Make Me Good Soil

.

Podcasts

• Sickbabe, Suriya Aisha.

Film

• Unrest, Jennifer Brea (award-winning documentary about living with ME/CFS).

Products and initiatives

• This Thing They Call Recovery (Jenny makes beautiful, funny, poignant, inclusive, sustainable t-shirts, prints and stickers for the reality of chronic illness, through a disability justice lens. My favourite? “Rest does not need to be earned”, which hangs on the wall above my desk)

• Refusal to Heal by

  Regenerative Transmissions

• The Lyme Museum.

Addiction

There are parallels between becoming chronically ill and going through addiction recovery, for example, in how you have to entirely re-make your life, the grief of what’s been lost, and the stigma. I also believe that elements of modernity, for example, relentless growth and ecological degradation, are inherently addiction and chronic illness-generating. Browse the list in Griefsick’s Bookshop.org profile.

• The Outrun, Amy Liptrot (alcohol addiction recovery and life re-building in the Orkney Islands)

• Quit Like a Woman: The Radical Choice to Not Drink in a Culture Obsessed with Alcohol,

  Holly Whitaker
  (part addiction recovery memoir, part examination of our drinking culture and finding new, non-patriarchal paths to recovery)

• Deep Fix
  ,
  Recovering

On my list to read

• Through an Addict's Looking-Glass, Waithera Sebatindira.

Disability and Disability Justice

Disability Justice is a movement founded and led by disabled, queer People of Colour (see Sins Invalid below).

If I could only read five of the books below, I’d choose Care Work, Crippled, How to Survive a Plague, Rest is Resistance and How to do Nothing. Browse the list in Griefsick’s Bookshop.org profile.

Books

• Care work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha (exploring disability justice)

• The Future is Disabled: Prophecies, Love Notes and Mourning Songs, Leah Lakshmi Piepzna-Samarasinha (what if we need disabled wisdom to survive the future?)

• Disability Visibility,

  Alice Wong
  (beautiful collection of personal essays by disabled writers)

• Crippled: Austerity and the Demonization of Disabled People, Dr Frances Ryan (essential reading to understand the landscape of disability in the UK)

• Radical Help: How we can remake the relationships between us and revolutionise the welfare state, Hillary Cottam (what would a care-based state look like?)

• What Can a Body Do?: How We Meet the Built World,

  Sara Hendren
  (undoing assumptions about disability and the built world)

• Inflamed: Deep Medicine and the Anatomy of Injustice,

  Rupa Marya
  and Raj Patel (the relationship between health and the injustices of our political and economic systems)

• Healing Justice Lineages by Cara Page and Erica Woodland. A critical read that places care back in the collective (a counter to the commodification of self-care), sharing the healing lineages of Black, Indigenous, People of Color, and Queer and Trans people in the US

• How to Survive a Plague: The Story of How Activists and Scientists Tamed AIDS, David France (a history of the AIDS activism movement)

• Pleasure Activism: The Politics of Feeling Good, adrienne maree brown (learning from disability justice, among other movements)

• Many Different Kinds of Love: A story of life, death and the NHS, Michael Rosen (a Long Covid disability story)

• Rest is Resistance, Tricia Hersey (resisting productivity culture).

• How To Do Nothing: Resisting the Attention Economy, Jenny Odell (resisting productivity culture).

• Four Thousand Weeks: Time Management for Mortals, Oliver Burkeman (resisting productivity culture)

• Wintering,

  Katherine May
  (an invitation to slow down, to rest, to embrace the troughs of life)

On my list to read

Thanks to Shivani Mehta Bhatia for bringing some of these to my attention.

• Year of the Tiger: An Activist's Life,

  Alice Wong

• Disabled Futures: A Framework for Radical Inclusion, Milo W. Obourn

• Body Is Not an Apology: The Power of Radical Self-Love, Sonya Renee Taylor

• Black Disability Politics, Sami Schalk

• The View From Down Here: Life as a Young Disabled Woman,

  Lucy Webster

• Crip Negativity, J. Logan Smilges

• Crip Kinship: The Disability Justice & Art Activism of Sins Invalid, Shayda Kafai

• The Burnout Society, Byung-Chul Han

• Intervals, Marianne Brooker

• Radical Rest: Notes on Burnout, Healing and Hopeful Futures,

  Evie Muir (she/her)

Newsletters and articles

• The View From Down Here

• What is health justice?, by Healing Justice London and Fernanda Peralta.

Podcasts

• Call Me Disabled,

  Poppy Field

• Deaths by Welfare, Healing Justice LDN.

Film

• Crip Camp: A Disability Revolution.

Initiatives

• Sins Invalid and their 10 Principles of Disability Justice

• Healing Justice LDN’s programmes

• Society of Disabled Oracles

• Restful city

• Nap Ministry's Rest Deck: 50 Practices to Resist Grind Culture, Tricia Hersey.

Grief

Embracing Grief has some great, wide-ranging resources here. Browse the Books list in Griefsick’s Bookshop.org profile.

Books

• The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief, Francis Weller (foundational book on grief tending)

• The Smell of Rain on Dust: Grief and Praise, Martin Prechtel (the trauma of unexpressed grief)

• Active Hope, Joanna Macy (facing climate grief)

• A Celtic Book of Dying: The Path of Love in the Time of Transition, Phyllida Anam-Aire (Celtic approaches to death and dying)

• The Five Invitations: Discovering What Death Can Teach Us About Living Fully. A beautiful meditation from a Zen Buddhist hospice co-founder on how holding death close brings us greater aliveness

On my list to read

• Tending Grief: Embodied Rituals for Holding Our Sorrow and Growing Cultures of Care in Community,

  Camille Sapara Barton

• Grieving While Black: An Antiracist Take on Oppression and Sorrow, Breeshia Wade

• Rebellious Mourning: The Collective Work of Grief, Cindy Milstein

• The Spirit of Intimacy: Ancient Teachings in the Ways of Relationships, Sobonfu Some

• Ritual: Power, Healing, and Community, Malidoma Patrice Some

• The Year of Magical Thinking, Joan Didion

• Grief Worlds: A Study of Emotional Experience, Matthew Ratcliffe

• Die Wise: A Manifesto for Sanity and Soul, Stephen Jenkinson

• Earth Grief: The Journey Into and Through Ecological Loss, Stephen Harrod Buhner

• Why the World Doesn’t End: Takes of Renewal in Times of Loss, Michael Meade

• With the End in Mind: Dying, Death and Wisdom in an Age of Denial, Kathryn Mannix

• The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, Mary-Frances O'Connor

• Grief is for People: A Memoir, Sloane Crosley

Newsletters

• Navigating the Wilderness
  ,
  Grief Spells with Mara June

Zines

• Plant Magic for Grief Support,

  Mara June

Products

• The Grief Deck: Rituals, Meditations, and Tools for Moving through Loss, Adriene Jenik 

• The GEN Grief toolkit: Embodiment tools and rituals to support grief work in community, Global Diversity Foundation.

Initiatives

• The Loss Project (supporting people to feel more confident in exploring their grief and loss)

• Bacii (changing how we understand end-of-life topics, inspired by traditional Laotian baci ceremonies)

• The Dark is Bright (collaborative, 10-week programme to explore grief and loss, culminating in collaborative filmmaking)

• Life and Loss (resources to support with grief)

• The Grief Series (a sequence of seven collaborative art projects by Leeds-based artist Ellie Harrison).

• The Good Grief Project (understanding grief as a creative and active process)

• Writing your Grief (a self-guided 30-day course)

• The Good Grief Network (US-based nonprofit supporting people in their climate grief)

• The Dinner Party (US-based community support for 21-45 year olds who have experienced bereavement)

• The Keening Wake, Maeve Gavin (learning from the keening traditions of Scotland and Ireland)

• The Work That Reconnects, Joanna Macy (climate grief)

• Stewarding Loss (resourcing organisational endings in UK civil society)

• Guided by Grief (a six-week virtual workshop to invite you into more compassionate, reverent and trusting relationship with your grief)

• Feed your grief (tending to grief through food and ritual)

• Meso (grief support centring immigrant families)

• Pause (a newsletter with grief & mental health resources by & for People of Color)

• Grief Threads (creative grief processing through quilting and ritual)

• Love and Loss (grief circles)

• Grief Tending in Community (grief circles)

• Grief Work, Healing Justice London (grief circles).

Leave a comment below if you have recommendations of what should be on this list!

Fill in this short form if you’d like to illustrate 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.

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