“Take up that space”

A conversation about a ritual to grieve and celebrate a life with chronic illness

Illustrated portrait of Fyn by Francesca Cook

Welcome to GriefSick Chronicles, a collection of conversations exploring chronic illness grief.

Fyn Cornish is based in Devon and managing ME/Long Covid. They are on a personal mission of self-reparenting through creative expression and nervous system work. Fyn is interested in the crossover of their own neurodiversity, trauma and illness and has a general interest in creating safe, inclusive spaces where honesty and creativity can bring a sense of belonging. You can get in touch with Fyn via email: tamsinfyncornish@gmail.com.

I am inspired by Fyn’s courage and vulnerability in asking their friends to create a a ritual for them, and in allowing themselves to be cared for in such a deep way. I can’t help but wonder what might shift for me if I tried something similar, and how different our relationships would be if we normalised this kind of collective witnessing.

In this conversation, we talk about:

• The importance of community in expressing chronic illness grief

• How Fyn and their friends designed a ritual that welcomed chronic illness grief 

• The relationship between grief and isolation in chronic illness

• How hard it is to ask for and receive care as a chronically ill person

• The role that queerness plays in enabling communities of deep care.

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You can also listen to our unedited audio conversation.

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Can you describe your journey with chronic illness?

It probably began about eight years ago, got steadily worse and then got particularly triggered by some bouts of Covid and other heavy viruses. Now, I identify with ME/ chronic fatigue and Long Covid. A couple of years ago was when it started to tip over the edge. But I just kept on going. And then, about a year ago, my body just stopped me. My osteopath said, “you have chronic fatigue and you need to stop”. I kind of knew, because I was not right, so I was very ready to hear those words. I was like, “there's something going on but I don't have the courage to make it into a thing”. The osteopath gave me the permission to stop. I was just so relieved, crying with happiness, almost. Since then, I stopped working, I’m on health benefits. Some days, I need to do absolutely nothing, other days, I can do a little bit.

What is your relationship with the grief of chronic illness now, after your year of stopping?

It's one of those things that's so ongoing. There's so much to grieve and process that it's hard to make that space for or locate that because it's so vast and so personal. It can feel like it's trapped inside, without shared spaces. That's why I love grief work and shared spaces to bring stuff out. And just generally finding communities of people with chronic illness. I'm part of a Long Covid group¹, it's all about resetting the nervous system. And that's where, currently, I let that grief move through me and be heard. The grief feels welcomed there, because other people just get what I'm going through. When you're in a space where the grief is shared, it feels safe. It's like, “oh, I'm not alone. I'm not crazy”.

I know that you recently took part in a ritual relating to chronic illness grief. What was the ritual and where did it come from?

How it came about was my friend initiated a grief ritual with his friends because his dad had passed away. It was for him to process his grief but it was also for everyone to process their grief. I just thought that was amazing and courageous, to ask for that. That really inspired me.

My ritual was a couple of months ago, at a time where I was feeling big transitions coming, feeling like it was really needed to mark that in some way and to tap into the amazing community I've got around me. I used the permission of it being my 30th birthday, which helped me to feel like I could ask for something like that. As much as I would like to not need that “excuse”, it does really help. 

I tried to take off any pressure to invite people I “should” invite and I just brought all the people I feel deeply safe around. And we had an afternoon together. My dear friend Pan held the space and the theme was wellness and comfort. Everyone had made this amazing altar in the middle with beautiful pink and orange and yellow flowers. And there were snacks on the side, snacks that I love, that they knew to bring without asking me. And there were flowers everywhere, and beautiful rugs, and it just felt like I opened to heaven. 

The idea was to bring everyone in, make them feel really welcome to be as they are, and then building towards me stepping into the middle and receiving people's care. And I didn't quite know what that would look like. In the moment, it looked like people placing their hands on my body and humming and singing and saying nice words. And yeah, it did become, like, properly ritual vibes. And then in the end, there was this sense of me rising. Everyone put their hands on my back and helped me gradually rise up. And then everyone was there with their hands on my back; many tears were shed. I've tried to sort of implant that memory in my system, hopefully forever. It was a grief ritual in its own way.

That sounds so beautiful. What was the journey or structure of the ritual?

We started with a bit of welcoming. And we did a little go-round, just for people to just say how they're doing. And then we went into pairs, and asked each other for what we wanted from each other. People had little bits of massage and stuff like that. Some people didn't want touch, and it was great that they felt welcome to do it their own way. And then we had a break. After that, we went outside and collected objects that could support me or support us, and we added them to the altar in the middle. And then we did movement, where everyone could just be in their own bodies for a bit. And then another break. We were then going to do a thing where each person had the chance to be in the middle and receive loads of love from people. But actually, one friend was like, “surely we should just have you in the middle the whole time?”. And I kind of wanted that but I was so scared of asking for it. I really needed that. I knew I needed that. So we decided to instead use that second half for me to just take loads of time in the middle, because it took a long time for me to be able to get into the middle, I felt uncomfortable. That bit just unfolded in its own way, with singing and touch and then after that it just naturally opened out into giggles and someone brought me this stack of cheese as a cake (because I'm not actually that excited by cakes!). 

It felt like the whole space was conjuring up that feeling of welcoming everyone as they were. Some people just rested.  And you could just see that people felt welcome to be sad. It was always like, “it's fine if you don't want to join in or you don't want to sing to me”. Then we all slowly tidied and cleared out of the space. Then I went and had a curry with my two friends and had a laugh, just, you know, let go of the depth a bit. And then I went home. I just remember feeling radiant. I felt alive in a way that I hadn't felt in so long. It was incredible. I don’t know if I’ve ever felt that amount of love at once. Yeah, there's nothing quite like it.

How did grief show up in that ritual space?

The grief of chronic illness is isolation and how hard it can be to receive the amount of love that you need. Needing, needing, needing, then feeling guilty about receiving love. That particular grief was very strong in the moment, really letting people in, letting this grief come out through receiving the love that I long for. And we all need it, whether we're ill or not, but it comes up so strongly with chronic health, this feeling that I don't deserve love. That I'm isolated, that I'm alone, that I can't give to people anymore. That's not true, but it feels like it. With the chronic health stuff, it's almost like parts of me think I deserve love less than ever before. Because I can barely do this, barely do that. I'm not going out and working, you know, in the front line. More than ever, that feeling is there of not being worthy of love. Being a waste of space on the earth, you know? 

From the very beginning of the ritual, I felt a lot of that grief of like, wow, it's so hard to receive care. And then the moment when I walked into the space, the grief just poured out of me, seeing everyone's warm faces and them all smiling at me. In that is the deep joy of letting everyone hold me, and also the sadness of how alone I often feel and the combination of that.

So being there in that ritual space, and feeling so welcome was counteracting all of that and thus bringing all of that grief out in a really good way, really rewriting all of that, basically. That pure, pure feeling of grief being worked with and moved through, rather than feeling stuck and lost and numb. It feels like the whole thing was particularly tapping into that side of the grief and also gave a space for me to express to my friends how hard it's been. I had a bit of a cry and just shared from that deeper place. Again, rather than something that's all twisted up in my head, it's just breathing it out. People witnessing it and hearing me and really loving me. That's where it needed to go, you know, I just needed to be heard. Otherwise it becomes the feeling of, “this is so hard and no one cares”. People just being there, and crying and sharing that with them. That's a gift. “I'm not okay” is now a beautiful, flowing gift. And everyone's like, “oh, I love you. Thank you for telling me, I wanted to know that.”

After this experience, what has been the impact on you?

Afterwards, I felt this very strong mix of something very deeply different. One part of me was so deeply relieved and calmed by the experience and just amazed that that was possible and really steadied and energised by it. The days before I went to that ritual, I felt like shit, I had a really bad headache, I was really achy all over. I came out of that ritual that evening, with no pain or exhaustion. But also, things were really tough. Things were rejiggling in my head and in my system. I think it was to do with the grief.

What does this ritual represent for you?

Finding the power in this really challenging journey and reclaiming that. And being really creative with what I can ask for, and tapping into how powerful, how vital and important community is.

Also, my friends have really helped me a lot over the past year, and marking that in one moment felt really powerful, like, these are the people who've been there. Without these people, I would be a disaster, they are my lifeline. And to bring them all together in one place, it brought to reality that I am supported, and I am loved. And people do care. I can feel the power of that much more than when I'm alone, forgetting who my friends are, feeling like I really need something, but there's no one there who can help me with that. It's like, getting all of them together and being like, “oh they have been there”. It also gave me an opportunity to thank them, all at once. It's both taking the opportunity to receive another boost of love, but also to let them know how much I love them and to connect to my community all together, in a safe way, in a held environment.

I'm wondering about what roles (if any) queerness and chosen families play in this ability to bring people together like this?

I do think that I do relationships quite uniquely, I would say I have very, very strong friendships. Some of them have real partnership qualities, and I think queerness is all part of that. It brings a shedding of a norm of, “man and woman get married and have a baby blah, blah, blah”. I just don't see it like that. And a lot of my friends don't see it like that. I think it does bring more space for people to make really deep family connections and I'm always wanting more of that and growing more of that. With Pan, my friend who held the ritual, it does feel like a platonic partnership, we are so committed to each other. And they were the perfect person to hold that space. I feel very passionate about bridging, creating family, and not being afraid to do that with friends. Because it's also really hard and really scary.

Thank you for talking that through because I feel like everyone, and especially when you're chronically ill, we are just not served well by the heteronormative, nuclear family set up. When you're this sick, you need more than your one partner as your support. And that support needs to have that element of partnership spread across more people. The support can't be superficial, there needs to be that deeper commitment. It's only recently that I've started to experiment with that, with a group of friends who have experience with chronic illness. But I'm not queer, and it is difficult to step into that, when you come from a very heteronormative background.

The heteronormative structure of things is really tough. I've been feeling it quite a lot recently, even though I am someone who builds these amazing family connections with friends. Yet, I still have this feeling, because though I have partnership-y friendships,  many live elsewhere, and I don't have that thing of “my life partner who lives down the road”. So in those  ways I still relate to the feeling of being single and being ill. I've got my parents, which is amazing. I'm really helped by them because they do offer that thing of really deeply committing to helping me but yeah, definitely, it's really hard. I spend so much time waiting, just waiting till someone's free or waiting till I feel I could ask that person for help again, because I've asked them a lot recently. It's really, really hard feeling that powerless.

What advice would you have for someone who really wanted to do something like this ritual, but felt scared?

It's a good question. I'd say find an anchor person, a friend who you feel you could talk to about it. And just be like, “would you be up for helping me think this through?” Pan really helped me to find the courage. Because sometimes you need a friend to reflect to you that, actually, you're not crazy and selfish, what you're asking for is something that people will want to be there for. I had a few key people that I was like, “can I reach out to you if I'm having a wobble the morning before the ritual?” Or like, “can you guys be my anchor people after the ritual?” In the run up to the ritual I went into serious amounts of anxiety about it, like, “how could I ask for this, no one will want to be there, this is so selfish, I'm going to ruin it, or not everyone's going to show up. And I'm going to be all tense and anxious”. I had so many feelings come up. Pan and others really supported me with all of that. That was all part of the process of doing the ritual, was me readying myself to be able to receive that care. I had to work hard, I had to go through a lot of stuff to get there.

I had to ask for a lot of help, because I just couldn't have done it all. So, in the run up, I kind of asked people if they could take on different roles. I made a group chat and then I actually left the chat. It felt like I was asking for the world. But when I asked, people were like, “that wasn't that much”; especially for those who aren’t chronically ill, those things are actually quite simple tasks for them. I had to let go, which was really hard. Because of the fear that if I let go, and I'm not in control, no one's going to be there. Because no one wants to be there. That's the baseline feeling. But actually, I managed to let go of a lot of work. It was great letting go because, with being ill, I'm constantly having to look after myself. Really trusting that I can just let go and people will be there and give me what I need. That's scary. That's a big thing. It takes a lot of trust.

Yeah, my advice is just, like, go for it. A friend also guided me to a website which is really helpful in creating meaningful gatherings.

What can we learn from this ritual about what amazing support could look like for chronically ill people? 

One thing is just how powerful it was to be in the centre of something, and be receiving people's touch and singing. It's hard to put words to, it's beyond the mind. The collective power of it is so big. I'm curious about that. How could we, as chronically ill people, receive that? Is it a thing that we could integrate into everyone's lives? Is it a thing of healthy people sharing that energy with ill people, or could it be possible for ill people to gather and give that to each other? Or is that too much? I'm particularly curious about gathering chronically ill people together and how to do that in a resourced way when this is an under-resourced group of people. It's the power of feeling safe in a space where everyone's got a shared experience and that holds its own treasure, and yet there's maybe other times where having some people with more resources to help something happen could be good. For the ritual, I chose people to do different things who had the resources, and for the actual showing up, there were eleven of us, nearly half of us with health challenges . Those who were feeling resourced did the organisational stuff, and that worked amazingly, others, including those with health struggles, and chronic illness, could just show up. I don't feel it took any of their energy away, it felt like it filled them up. So that makes me feel that there's space for that.

What impact might this kind of ritual have on people outside of chronic illness communities?

A few of my friends have been saying, “well, I'd quite like to do something like that”. And just the other day, a friend of mine did something where they were really asking for what they wanted on their birthday. Overall, it's just realising that we can ask for that, and that people want to show up for these things. It's not me taking a thing because I need it. All my friends love me, and they want to know how to be there. And, you know, everyone felt really good from it. Rather than thinking that what I'm asking for will be a detriment to other people, it's reframing it. Actually, people want to come together and help each other, it's a gift for everyone. And I just want that to happen everywhere. I want everyone to feel permission to ask for that. It can be smaller as well. You could just be like, “can you listen to me for ten minutes?”. I just want ten minutes listening or it could be someone to sit with and not talk at all. I just feel so passionate about being creative about how we ask for support and just daring to ask for it and trusting that people can say no. And also, they're likely to want to do it. And the power of people coming together and pouring a load of love into one person. I want everyone to have that on their birthday! I just think, “yes, take up that space”.

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1.  A service Fyn has found useful (neither Fyn nor GriefSick have any affiliation).