No one ever said to me, “this is grief"
Emily Bazalgette on metabolizing grief, doing a Google PhD in autoimmunity, and vacationing with sick and disabled people
Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.
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is an inspirational sick person, and not because she pushed through and beat the odds. Rather, she is a clear and deep thinker who has done extensive work to understand herself, her values, and her boundaries after being struck with severe chronic illness at age twenty-eight. Her insights about her own grief process have led her to launch the newsletter earlier this month, where she is exploring the under-discussed topic of chronic illness grief.In this conversation, Emily shares her journey, insights about herself, and visions for a future world where the illness grief process is widely acknowledged and deeply supported.
You can find additional resources from Emily at the end of the interview.
Key themes from this conversation:
Grief is at the center of the chronic illness experience for many people but often goes unnamed. As people lose parts of their life–capabilities, spontaneity, aspects of identity, there is inevitably a grieving process associated with those losses. Calling it “grief” helps provide narrative and understanding, and helps us feel like it’s a normal process.
Illness, and particularly energy-limiting illnesses, changes your relationship with time, since what you do today impacts your life next week, and you don’t have full control over what your capabilities will be on any given day. This reality often draws people towards cyclical or seasonal ways of living, where we recognize that, while we have some control over our energy patterns, ultimately the external and internal weather of the day are out of our control.
Groups of chronically ill and disabled people operating together can give us a model for a unique type of emergent organizing. When one person needs to rest, or can’t take on a task because the lights are too bright or any other reason, other people naturally step in with full understanding and without questioning the limitation. What would work look like in this emergent model?
Rae Katz: I know you have a long list of diagnoses, but in your words, what do you have? And when did it start?
Emily Bazalgette: At some point, I might have to check the list of diagnoses I have on my phone, because otherwise I just can't remember them all! The story starts in September 2015, when I was on holiday in Vietnam, and I got bitten by maybe a mosquito, maybe a tick, it's unclear. And I got some kind of unknown virus. I was hospitalized when I was there, and then I came back home and at the time, it really felt like an acute illness story, rather than a chronic illness story. It was like, oh, that was horrible. But I’m home now, I’ve had blood tests at the GP and everything's fine. I took six weeks off work, which felt like a lot. And then I was like, okay, back to reality now.
Then I spent two years basically denying that I was chronically ill. So if you had known me in that time, you wouldn't know that I had ME/CFS. Exercise is my passion, and I actually upped it—I was doing PT twice a week, lifting weights, all this stuff. I was back at my consulting job working fifty, sixty hour weeks. And then I would sleep for 14 hours on a Friday night, and stumble my way through the weekend, and then go back Monday to Friday hitting it really hard.
During those two years after the infection, I also started developing wild immune symptoms that no one connected—I was having fungal infections, crazy skin infections, loads of mouth ulcers, just loads of terrifying gynecological stuff. I would go to the GP, I get a cream, you know, a steroid cream or or an antifungal. And then it would be onto the next thing, and it kind of just cycled through that for two years.
Then in 2017, I started getting sicker and sicker. I quit my job and I went freelance, partly as a way to try to control my hours, and try and get some semblance of rest. I still didn't have any diagnoses. Then in 2018, my plan was that I would take two months off work in January and February. And then I would go back in March and be smashing it again, and life would be back to normal. And then I just completely fell apart in February of 2018. So yeah, I didn't work for ten months.
R: So during your two months of medical leave basically things got much worse?
E: Exactly. I was still trying to do 10,000 steps a day. Rest, but don't rest. So then everything unraveled. And I spent basically 10 months doing a Google PhD in autoimmunity and ME/CFS.
R: Did you ever have a doctor diagnose you or did you figure it all out through Google?
E: I did have a doctor who diagnosed me with a fake version of ME, which I've since found out they do quite a lot, particularly in the UK. He diagnosed me with “post viral fatigue syndrome,” even though I clearly met the criteria for ME at the time. He said, “I’m not going to give you the diagnosis of ME, because if I do, you'll believe you have ME and then you'll never get better.”
R: That’s wild.
E: Yeah, yeah.
R: So you’re doing this deep research for ten or eleven months…
E: Yes. I also had a breakdown of a long term relationship in that year, so I was very isolated, I had no energy, I couldn't really see anyone. It was quite an extreme time. I was doing a lot of Googling, and then the first thing that helped was hitting upon autoimmunity and getting my head around that as a concept. I have still never had a correct diagnosis of an autoimmune disease—I was nearly Hashimotos, but not quite, and nearly celiac, but not quite. So, it was all still unclear. But I did take a lot of steps to address autoimmunity, and I do consider myself in remission.
R: Can you say more about that? We're not primarily focused on solutions here, but I do think it's interesting to hear about people who self identify as “in remission.” I am really curious what that process looks like for you.
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E: Yeah, so I had a suspected gynecological condition called lichen sclerosus, which I’ve since found out was an incorrect diagnosis. Lichen sclerosus is an autoimmune condition. Basically your vulva becomes really raw and the skin is really sensitive, and then you get really itchy and it's really, really painful. Obviously painful to have penetrative sex, but also just painful in general. I had all of those types of symptoms developing ever since I got bitten by the whatever. So it was two years, and you can imagine, I mean, I'm not gonna go into it, but trying to get any kind of gynecological condition treated seriously by the medical industry…yeah. So I had all of this bullshit from doctors that you would expect, like, “have a gin and tonic and just have sex with your boyfriend because you're not pleasing him,” and like, “he'll leave you.” So it's just like, wow, okay. That’s a lot of medical trauma.
Anyway, so I found autoimmunity as a thing through this incorrect lichen sclerosus diagnosis. And then I had all of these other thoughts, like, is it Hashimoto’s? Is it other stuff, right? I discovered functional medicine. This was 2018, and I started with a version of the Paleo diet, the autoimmune protocol, and that I still do to this day, and it has been the major turning point with the autoimmune stuff. Nothing's ever really helped the fatigue, the ME/CFS. But in terms of autoimmunity, the diet really, really helped the gut, skin and gynecological stuff to the point of total remission for four years and counting. I also saw a women's health specialist physio/osteo and had manual therapies. And then I also did a lot of spiritual, emotional, sexological bodywork stuff, as well. When you're dealing with something where there's a lot of trauma, and especially if it's about sexuality—there are a lot of elements to that. So those were some things I did, I wasn't very strategic about it at the time, but I guess looking back, it was quite a holistic approach.
R: It's just incredible how much self-direction that requires. You basically took it on yourself, and that shouldn't be how it is.
E: I just remember coming back from another doctor's appointment and sitting down on this sofa and just thinking, “Oh, wow, no one's coming to save me.” I remember that so well. I was like, “It is on me.”
R: Yeah, that's a really lonely feeling.
E: It's very lonely.
R: I know that as part of all of this, you've been focusing more professionally on grief. And I'm sure that's informed by your own process. What does that work look like for you right now?
As I am starting to metabolize those griefs, I am finding so much joy and liberation and intimacy.
E: It's a very new direction for me. The big dream is to get to a place where there's a super rich ecology of grief offerings and support, whether it's for bereavement, or climate grief, or menopause grief, or chronic illness grief, or whatever it might be. I'm going to start by focusing on the chronic illness side of it. There isn't really anything in the world specifically looking at chronic illness grief—academics don't study it. What we need is a rich ecosystem of ways that people can feel witnessed and validated and supported in their grief, from a position of not fixing. So I think there's a big gap, and I would love to be part of filling it.
The reason that I came to this desire to work around grief is that it took me five years of being sick, and a lot of loss, to realize that I was grieving. In 2018, I lost my seven-year relationship, I felt like I lost my career, I lost several other close relationships because I just wasn't there. I lost exercise, which was my passion. That all happened to me in a span of about eight months. I lost a lot of functionality, spontaneity—there's just so many losses and they compound and they change and grow over time.
I knew I had lost things and I was sad and I felt a lot of rawness around that, but no one ever said to me, “this is grief. You've lost things that were important to you and you are grieving them, and that's a really natural process.” My very good psychotherapist didn’t even frame it that way. I think there was someone on Twitter who first introduced me to the idea that grief is not just about bereavement, that you can be chronically ill and grieving. And since then, I’ve just been totally preoccupied by that. It gave me this language, this framework, this sense of meaning and narrative for what I had been through. This understanding that it's natural to grieve a loss, even if it's not a person, but your identity or relationships, for example, has been really transformational for me.
I have found that as I am starting to metabolize those griefs, I am finding so much joy and liberation and intimacy, all kinds of things through that process. I don't want to speak for other people, but this is what I've experienced, and I know from the reading I’ve done that a lot of people experience that kind of metabolizing and then transformation through grief work. I don’t think grief work is right for every chronically ill person all of the time, but it helped me and I would love to share it.
As a very first step, I launched a newsletter, Griefsick, earlier this month. It’s a place to work out loud, to explore the stuff I'm reading, to have guest contributions from other people that want to work through this too. Later this year I will be training in models of collective grief work that come from Celtic and indigenous practices, where it’s about group witnessing of grief, rather than trying to “fix” anything.
And then to be honest, I need more spoons, and I need more people. I need more energy to facilitate the group grief work. And I need to do this in collaboration with others because it's too fragile if I'm holding everything, sometimes I need to take two months off to rest.
R: It’s kind of shocking once you realize that this is a very real form of grief. It's shocking to look back and think about how that wasn't obvious from the beginning. But culturally, it's just not how we talk about it, to your point.
I saw in your writing some discussion of shame and grief, and the role of shame in chronic illness, particularly when you write about taking time off work. Can you tell us about this?
E: Yeah, so age thirty feels like a complete transformation year for me, because I lost all of those things that I've outlined. And those were all markers of identity. Suddenly I couldn't be a “good” daughter. I couldn't be a “good” partner, I couldn't be a “good” friend or a sister. I was ashamed of all of this. I was no longer a super smashing-it-at-work person. I wasn't someone who worked out. I wasn't a weightlifter anymore—all these things.
R: So then who are you?
E: So who are you? Exactly. I spent a lot of time sitting under a tree in my local park, when I was able to go there, with my journal, just being like, who am I? And actually the answer I came to sounds very trite and basic, but it really did feel like a revelation: I am me. There is something core to me that is not about these external things. There's just a core Emily who is worthy and valuable. And that realization has never left me. It has been a huge source of confidence and strength, no one will ever be able to take that away.
So, weirdly, when I was able to work again, very much part time, I found that my career kind of lifted off after that. Lots of other things in my life really came together, even though I was so much more disabled and able to do so much less, but I now operated from this base level of confidence that wasn't there before. It's not that I don't still feel triggered, or don’t have shame about it all—I still have obviously internalized ableism, like we all do. I’ll probably be working through that forever. But yeah, some things really shifted that year.
R: That's really, that's beautiful. I can see how you'd want to help guide people toward that. It's a hard problem for someone who's been achieving all their life—you can't just one day be like, okay, and now I'm gonna feel my core essence, here are the steps I'm gonna take, here's my plan and my to-do list. That's how I would want to approach it, you know, if I could. But it's a totally different process. That's why I love hearing these stories.
E: Yeah. And for me, there's also been the role of nature and the seasons, really understanding and immersing myself in the seasonality where I live in Northern Europe, and just understanding that we're not meant to be the same every day. We're actually not meant to be productive every day. Days and weeks are gonna look different because of your internal weather or the weather outside. We're meant to have periods of hibernation and going inward, we're meant to have times of the year when we are outward. Observing how my energy flows with the year, and allowing myself to not be the same every week, that’s kind of essential for chronic illness, right? Because the level of uncertainty and unpredictability is so extreme. But yeah, if you don't find ways to start to befriend it, it can consume you.
R: That's interesting. I have definitely noticed that people with chronic illnesses, and particularly those that are under-studied or not well defined or not believed, do often kind of lean into cyclicality or seasonality. That’s really interesting to me—why do we all feel drawn to that? And I think you've just articulated it really well, which is: it breaks us out of the expectation that we can control the weather of the day, basically.
E: Yeah, that's so well put.
R: I’m curious, just really tactically, how you do that in your life? So you're listening to your internal weather, what does that actually look like for you?
E: On a macro level I follow the Wheel of the Year, which is a modern pagan construct. This splits the year into chunks of six weeks. Every six weeks, there's a festival to mark a particular point in the year. So for example, summer is the time where we're starting to reap what we've sown in spring, and that makes me think about how I have more energy in the summer—I always do, August tends to be the peak of it. And so in August, a pacing expert would say, “you're doing too much”—I’m talking to you, I have projects. I’m saying, yeah, I'll come and see you for the weekend. I do all that with the knowledge that autumn is approaching, and come November, I'm going to be in my flat for like four months. And that's okay. There's just a flow to that.
And then there’s also paying attention to that internal weather. Each day I say, what is today? How did I sleep? What's going on? If you have ME or other types of fatigue that come with other chronic illnesses, the day is never about the day, it’s about what happened yesterday, two days ago, what you were doing a week ago. Ellen Samuels wrote this great post about “crip time,” which is how chronically ill and disabled people operate totally different to an abled person. For me, I'm making calculations hour to hour: whether to do this or not based on how I am today, but also the knowledge of what I have tomorrow. If I do this thing today, I'll cancel that other thing in two days. This takes confidence and knowledge which has taken so many years to build up. And I would not say that I have mastered it by any means.
R: Yeah, I think it's a really interesting concept. In some ways, everyone's energy is variable this way, but for people who don't have chronic illness or disability, it can be a lot less evident. The idea doesn’t make that much sense to the logical, modern brain. Personally I find that, even having had experiences with fatigue, it's so hard for me to believe even my own experiences. It’s a very deeply ingrained thing that you should just be able to push through, that you’re just a little tired.
E: This is why I think chronically ill people and disabled people are oracles of the future. Alice Wong has an amazing project called The Society of Disabled Oracles. Limitless growth, limitless expansion, pushing through—we have to move away from all of that to have a livable planet and a life-affirming society. And I think chronically ill people and disabled people have so much wisdom in how to do that. But we don't have the cultural cachet where people would listen to us and respect the knowledge that comes from this lived experience.
R: I love that. I noticed in your writing that you group these types of under-researched illnesses along with neurodiversity, certain types of addiction, and other things outside of your specific kind of fatigue and autoimmunity. And so when you include all of those people, it's a pretty big group. Not so much a fringe group. But yeah, still not a lot of cultural power.
E: Which I think comes down to ableism and the ways we're made to feel ashamed by others.
R: Yeah. And, when you’re sick, it's hard or impossible to produce things at the rate that is demanded by the systems of the world. And so how do you work in an effective way, within those very fast paced systems, when you can't move at their pace? I don't know if you have been thinking about that.
E: Yeah, a lot. As a chronically ill person, you cannot operate at that level of production, like a healthy 23 year old, with no other responsibilities. That’s not inclusive for a lot of people.
When I go on holiday with my friends that are all sick or disabled as well—most of them have long COVID or post-viral illness, or are neurodivergent. To make that holiday work, things have to be done, and tasks have to be completed. And sometimes things need to be produced, like a meal that we all need to eat. And there's just something really beautiful within a group like that, an easeful, emergent approach for how tasks get distributed, how someone picks something up because someone else needs to go to bed for two hours. Or, “oh, the supermarket, the lights are too bright. Can you go and grab the food.” The production of that experience is generous, totally distributed, and really seamless.
I would love to see how that can be recreated in the context of work, particularly because my work involves bringing horizontal organizing and methods of collaboration to organizations. I've never experienced such a joyful version of this emergent organization as I have when I'm with other sick people. That's just something I hold in my mind.
Resources
All of Emily’s favorite chronic illness and grief resources are in Edition #2 of GriefSick, but there’s a lot to sift through. My top recommendations:
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)
- (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)
Everybody: A Book about Freedom, Olivia Laing (bodies, oppression, liberation and Weimar Germany)
The Invisible Kingdom: Reimagining Chronic Illness, Megan O’Rourke (the autoimmune diseases epidemic, systems biology, medical misogyny)
Rest is Resistance, Tricia Hersey (resisting productivity culture).
Newsletters:
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I’m curious…
What have you grieved in your life, totally separate from losing someone? What parts of you have you lost, what ways of being have you mourned?
How have you been able to access and nurture a sense of inherent worth and value, away from external validation and labels?
At the end of this interview, Emily talked about going on holiday with her friends who are disabled, chronically ill, or neurodiverse. Have you done this? What was it like?
Meet me in the comments.
I would just like to say that Emily sent me the best email I have received this month, which said, "I'm all good, psyched to chat vulvas on the internet, let's do it!" I just want to THANK EMILY for being so open with this topic that is usually kept totally hushed up.
Oh Emily and Rae, thank you so much for this interview. I have so much to say. Did a doctor actually tell you to have a gin and tonic and go and have sex?!?! Did that actually happen??? I had my own 'I'm not going to examine you when you're hysterical' which I talk about here https://emmasimpsonauthor.substack.com/p/whose-body-is-it-anyway but OMG??????? Seriously???? That doctor should be struck off - I have a special word for dismissive male gynae doctors. It begins with a c and as my friend says: 'if you haven't got one, or you are one, then get your mitts off mine'.
In the aftermath of intense grief from bereavement I threw myself into work - (I was also on maternity leave with my first child who had contracted meningitis and nearly died). I buried myself in activity. Back to work, moved house, got promoted, had another child, more work, moved house, transferred job, moved house, got promoted...you get the gist. My body exploded about 9 years ago, (initially with depression and anxiety) and then the physical deterioration followed. Like you say, Emily - so many 'unrelated' things, but which cannot be unrelated. I myself take the holistic angle, look after my lifestyle and diet, and no longer work in anything resembling a traditional career. Writing is now my life, as and when I can do it.
Yes the supermarket lights can be too bright, the sensory input overwhelming, or it can be intense pain and fatigue. New delights every few months. I probably had almost 2 years cumulatively off work over an 8 year period. The feeling of being worthless, unreliable, a let down, a liability, a flake, even though I was actually fucking brilliant at my job. Nonetheless I had to walk away. (Once forcibly and once by choice).
I also live on a different understanding of time - today is today. Tomorrow may be totally different. My actual today has been horrendous which is why I feel so connected to this subject right now in this moment. Needing to talk with those who understand.
I would love to collaborate and throw my spoons in the collective drawer every now and then. Today I have negative spoons, but it won't always be like that, and I'd love to be a spare spoon when others need them.
Much love to both and thank you for bringing such insight into this and bringing it to the fore. 🙏