#1: Welcome to GriefSick

A newsletter that explores and bears witness to chronic illness 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.

There are two ways that chronic illness can disappear your life. Slowly, and then suddenly. For me, it began slowly in 2015. Due to the disabling effects of ME/CFS, I experienced the gradual narrowing of life over the course of two years. Turning down the odd social event, avoiding errands that involved walking up the hill, looking for ways to reduce the demands of work. I was not prepared for the subsequent sudden disappearing. In the year 2018, over eight months, I lost a romantic relationship of seven years, several other close relationships, my abilities to work, socialise and exercise, my trust in my body, my imagined future and my sense of self. Some of these losses I regained, but in a significantly different version than my previous life.

I had lost so much, so quickly, but it wasn’t until two years later, in 2020 that I realised I was grieving these losses. I came across the idea of chronic illness grief on Twitter, at the start of the pandemic. From the wisdom of other chronically ill people, an acutely painful but formless experience was given language, meaning and shape.

I’ve been obsessed with the grief of chronic illness ever since. What is it? How is it similar and different to other griefs, like bereavement and climate grief? Why don’t academics study chronic illness grief? Why does an experience common to 40% of the population (26 million people in the UK have a chronic illness) have no place in mainstream culture? Where are the books, podcasts, documentaries and dramatisations of this particular grieving experience? Why is it so hard for abled people to witness chronic illness grief? Why is there no specialised support available? How can we mourn these losses? How can that be done safely and accessibly?

“It was through the dark waters of grief that I came to touch my unlived life. . . . There is some strange intimacy between grief and aliveness, some sacred exchange between what seems unbearable and what is most exquisitely alive”

― Francis Weller, The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief

From my own experience, and my nascent research into grief work, when you’re able to safely encounter and spend time with your grief, it has a thawing effect, opening up your heart to joy. Grief, metabolised communally, in the right conditions, can be liberatory.

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. Thank you to

Notes on Navigating

for helping me shape my earliest thoughts, and to Laura Malan and Fran Cook for creating the GriefSick brand. And thanks to the many others who gave me feedback and encouraged me to trust my intuition about this project.

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, tensions and inspiration, and hopefully content by other chronically ill contributors too. Editions won’t be polished or perfect and I will publish sporadically, when my energy allows.

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, please protect yourself by not subscribing.

What is chronic illness grief?

Chronic illness means a health condition that is long-lasting or permanent. The illness might fluctuate, and people may spend periods feeling better and then worse in a cycle. 40% of the UK population has a chronic illness. Chronic illnesses include conditions as diverse as ME/CFS, Long Covid, type 1 diabetes, endometriosis, depression, arthritis and psoriasis. I believe that chronic pain belongs under the umbrella of chronic illness, and that you do not need a medical diagnosis to be chronically ill (it can take years to secure one). If you’re sick and you don’t get better, even if doctors can’t tell you what’s wrong, you’re chronically ill.

Some chronically ill people, like me, identify as disabled. The state’s definition of disability is: “you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (Equality Act 2010). Not all chronically ill people feel disabled by their illness, or identify with the label of disability.

The grief of chronic illness can be looked at from two angles. Firstly, the grief that arises from the losses of living with chronic illness. The loss of identity, careers, relationships, hobbies, lifestyles, homes, safety, bodily autonomy, dreamed-of futures. We can also consider the griefs in life (for example, bereavement or divorce) that may impact on chronic illnesses through trauma.

Photo from the Millions Missing action for ME/CFS in 2019. Image description: pink, baby-sized Converse trainers with a handwritten tag that reads: “I look back and so much of the past 20 years has been lost in a fog of illness. Dear Daughter, how much I would have loved you…”.

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 brutal and transforming states, taking us to the very core of human experience.

For me, these feral states are inadequately represented by the anodyne motifs so often associated with grief (flowers, doves, looping cursive typefaces). I hunger for something true, authentic and raw. That is where I feel seen and comforted, in the offerings of the artists, mystics and misfits that grapple with the reality of sickness and grief. GriefSick takes inspiration from the boldness of SICK magazine and Sickbabe podcast, among others (see Edition #2 for more inspirations).

What’s next?

• An interview with

  Rae Katz
  in her excellent newsletter,
  Inner Workings
  , coming soon [updated: you can read that interview here]

• A co-enquiry into chronic illness grief with death educator, grief coach and bereavement consultant,

  Notes on Navigating

• Training in grief tending over Autumn 2023 with Francis Weller in Entering the Healing Ground: Grief Ritual Leadership Training, and with Sophy Banks in Apprenticing to Grief.

How you can support GriefSick

• Subscribe

• Share this newsletter with the chronically ill people you know, and the people who love them

• 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 to commission me to write for your publication, speak at your event, invite me on your podcast or send me some feedback.

• GriefSick is an unfunded creative project that I fit around my energy. If you’d like to support it further, please consider contributing to my Ko-Fi. 100% of KoFi payments go towards compensating GriefSick guest writers and illustrators.