Writing After Illness

How do you write when you aren't as well as you used to be?

Dear Sonal,

How can you start writing again after a long illness? An illness that has affected your brain and confidence.

I had a traumatic experience and I don't need to re-traumatize myself. I also feel like I've forgotten how to create a story arc.

Sincerely,
Trying to Write After Illness

Dear Trying to Write After Illness,

First off, I’m sorry this happened to you, both the illness and the traumatic experience. I don’t know if any particular person was in any way responsible for either of these, but if there was, I wish them a sincere get fucked.

What strikes me the most is that you are living in the After. After illness and after trauma, after your brain and confidence have been affected. But you still remember Before. And that has to be frustrating, that things cannot work the way they did Before.

And so you are re-learning things you already know, some of which is familiar but some of which is necessarily different, although I would think that it’s a muddle to know what’s going to come back something like as it was and what never will, and this on top of everything else in your life that you’ve had to relearn.

I can see how that would be a blow to the confidence, to have this thing, writing, that you knew how to do and felt connected and good about doing, now being yet another minefield that you need to learn how to pick your way around, instead of being the source of respite from everything that is hard in the world, instead of being that vital source of connection to your creative self.

You are the same as Before but also, not at all the same as Before, because this is After. I don’t know if you’re looking for a connection to Before through writing, but this, too, is tangled up in the new challenges of After. Writing is still mired in not at all the same as it was.

The next thing that strikes me is that I know someone who can speak to this far better than I could, so I had a conversation with Jill Margo, a writer, pressed flower artist and friend, who also has a small business helping other creators be in practice. (I’ve been working with Jill for a couple of years now, to help me actually write instead of having a lot of good intentions and no follow-through.) Jill is also chronically ill with both autoimmune and neuroimmunological illnesses, all exacerbated by perimenopause.

I read your letter to Jill, and we had a conversation about writing with disability and illness. Here it is (edited for clarity and a little bit for length and a lot because I say “you know” way too often.)

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Jill: Somebody wrote an article about trying to write with brain fog. Not me. I’ll find it. I'm having one of those weeks where like, the kitchen is the chicken.

Sonal: I think to myself, that has to be incredibly frustrating to know what it was like before, but you can't access that now. I know you've had chronic illness as well as more recent disability; how was some of that shift for you?

Jill: I think one of the big things is that people talk a lot less about is that illness feels like stress. It's a huge feeling of stress. Because every day you're like, how much can I do today? What am I waking up with today? And it just creates a real state of stress. And I think that when you have illness, you have to acknowledge that the stress state is activated, and you actually need to work on that stress state. I didn't know that. Nobody told me that. I didn't realize how dysregulated my nervous system got, because chronic illness also meant chronic stress for me. That's one thing people don't talk about.

The other thing is they don't talk about the grief. It comes with so much grief of like, I have little memories about when I could just go for a walk or something, and I didn't know how to appreciate it.

Also, when you have this period of being ill and usually there's—like for my chronic illnesses—there's a lot of medical gaslighting. It seems like years to get a diagnosis. So by that time, you accumulate a lot of stuff.

So those are some of the things. It's really hard on the nervous system, and tending the nervous system is something I've always been on about, because that was the missing piece. Everyone needs to do it, but when you have the high stress of chronic illness, or illness of any kind, and then also that grief piece, you need to somehow move it through your body.

Sonal: How do you tend to your nervous system?

Jill: I have all kinds of tools, but one of my favourite things is something called cyclic sighing, which activates your vagus nerve.

Cyclic sighing is basically you take a breath, and then top it up with a deeper breath. And then a long, slow exhale. There's something about that too, a long, slow exhale. It's so grounding. It's one of the most well-studied breathing patterns. There's actually legit papers on it that say five minutes of cyclic sighing is as effective as either 15 or 20 minutes of meditation. It's like hands down one of the best of them, and for some people it's a really easy entry one. But for other people when they first start, they can't get the breath. They feel really tight. They have such a state of anxiety. That comes with illness too.

Another thing that I do to tend my nervous system is co-regulating with nature. I also do a lot of guided meditations, Insight Timer, that kind of stuff. I do a bit of eye yoga, like half-salamanders, the vagus nerve activating things. Awareness of the polyvagal ladder and how we move up and down—the goal is trying to have a more flexible nervous system, instead of a nervous system that just freezes and shuts down or goes into fight or flight.

I think a lot of chronically ill people—I mean, people in general—are probably people that think their feelings more than they feel their feelings, so another thing is somatics, which is a bottom-up approach where you're really have to learn how to feel your feelings in your body.

Sonal: I mean, I'm not I'm not chronically ill. But I even have the same struggle. I think my feelings versus feeling my feelings in the body.

Jill: I think a lot of this stuff works for anyone in the culture that we're living in. Especially people who have chronic illness, people who are burnt out, neurodivergent folks, folks with depression, anxiety. Those are all systems that are being taxed, especially in this able-bodied capitalist world.

So very practically speaking, you have to have a plan of care and treatment that will allow you to come to your creative practice and work within your resources. We've got to assume that lots of people don't even have a care plan. They don't even know how to treat their illnesses like some people do. It depends on what you're dealing with. So you want to do your best to come up with your care treatment plan as your first thing.

Then in terms of creative practice, you have to really know what your baseline is. When you're chronically ill, people often misunderstand what a baseline is. They’re thinking baseline would be a return to their previous self. But you have to figure out what your new baseline is.

So I know my new baseline is if I calculate I can do X amount of things, and function a certain way, then that's me and my yellow zone, as I call it. If I go past that, I go into the red, which is worsening of symptoms, or black, which is a crash. Then green, which is like, you're having a really good day, though those don’t happen very often anymore. You just have to go, what is my baseline now? And that's what I'm aiming to stay at, by staying within your energy envelope.

I think this is the hardest thing to understand: pacing. It's SLOW pacing. Pacing protects us, but it does not increase our energy.

That's the other thing that people mess up. They go, “Great! I can do more things now.!” That's not how it works. Feeling better? It doesn't mean your baseline or your energy envelope has expanded. It means that you're solidly at your baseline again. So protecting that energy envelope is huge. You’ve got to stay within your energy, you’ve got to do the pacing. So what I recommend here at the Creative Good to have a micro-practice as your baseline. which, of course, is the is the system we work with, right? Just fifteen minutes, just small tiny steps. And then review and plan, and building on it when you can.

Maybe when you’re at your baseline, you might be able to go a bit further. But if you're in the red or the blacks, you're just going to want to do that micro-practice. So be okay with lowering the bar. And also being okay with a micro-practice that can still be a fulfilling practice. You really have to get away from all or nothing thinking.

Sonal: I guess that's the hard part. Because even for myself, just realizing that now that my life is busier, I cannot do as many things. My brain does not accept doing as many things, between, you know, children and life and menopause and ADHD, and all those things. It's a small amount of stuff that I can hold in my brain. And it's really hard looking back and thinking, Well, I used to do all these things, and now, I am not doing all these things, what happened?

Jill: And maybe our brains were never meant for high, high days of use. That's where the systems of oppression come in, because that's going to be there too. There's all kinds of barriers to pacing. So picking your pacing is a big thing, tracking your energy, resting before crashing.

Do self-care, not aftercare. Most people are still doing aftercare, which is “I crashed, so now I'll try and take care of myself.” Try to do it before you crash.

Here's the way it plays into systems of oppression, because they are at least three barriers. There are resource barriers, which means that to be well, we often need money for therapeutic treatments, medicines, etc. But also, one thing that people love to say is, “Oh, just delegate, get other people to do things.” If you have the resources to do that, great, hire the housekeeper to get laundry done, whatever. But not everyone has those resources. And having to do a job when you're not well, that's also a resource barrier. Like, if you need money, you need to go to work.

There's also responsibility barriers, which is generally people with children, or people who are taking care of elderly parents. And often, you can't get out of that. You can't stop being a mother, or whatever, you can't get out of it.

Sonal: As much as you might want to some days.

Jill: Right? So those two are often the hardest.

Then there's also psychological barriers, which is the one that we can work on. And psychological barriers are things like perfectionism, all or nothing, Good Girl-ism, all of those things that say, “I can't pace because, I've got to perform in this way.” Those are the ones that we can most work with. Systems of oppression come into that, of course, because it's like, well, why do we feel that way? Well, because of capitalism, generally, and all sorts of other things, like white supremacy, etc. Because those things make us feel like we have to show up in a certain way to earn our place in the world. People with marginalized identities, they already have to show up so much better than, you know, your average white dude. So how are they going to lower the bar?

There's also a really good book I want to recommend, it's called Rebel Healing, Transforming Ourselves and the Systems that Make us Sick, which is one of the only books I've ever come across that acknowledges that stuff, and how we have to do things like realize it's not on us. It's the system that we're in. This is our conditioning.

So it’s okay to take breaks, it's okay to lower the bar. Otherwise, people are blaming themselves thinking “oh, I have this thing.” And it's like, no, you don't have that thing. You didn't put that in your head. If you didn't have these systems, you would think, “Oh, this is a lovely time lying on the beach with my book,” you wouldn't think, “Well, I'm lazy.” And so I think that is really important.

But for things like resource barriers—and this is where I have a lot of trouble—I believe deeply in collective care. We're so terrible and asking for help. So collective care, believing in that, modelling, asking for help, all of these things really can help you, if you can get your head around it.

Sonal: I guess that's the trick. How do you get your head around all this?

Jill: Practice. Finding people that are doing it, modelling it, and talking to other people with chronic illnesses because otherwise, you tend to think that you're on your own. If you can get into a support group, or something like my pain clinic group, it's like, “oh wow, 10 People just told my story. I'm not just lazy after all.” Also, so much self-compassion and kindness as needed to hold yourself through that.

If you're experiencing brain fog, especially if you're a writer and working in the mind, then it's going to seem like a big challenge and failure. So like, how do you actually hold yourself in that, and find different ways to work with it?

Sonal: So how have you found different ways to work with brain fog

Jill: Preserving myself as much as I can, so I have that little bit of bandwidth. Trade offs, like, all the time. For me, brain fog can be a symptom. Absolutely. And it's much worse if I've overdone it. There's stories about, I don't know, amazing classical musicians and how many hours of sleep they need. And I was like, nobody's upset that they need that. You need 10 hours of sleep to write a page. So be it. Well, if you can get the 10 hours of sleep, right? Basically life with chronic illness is like, much harder and a lot more exhausting.

Sonal: I mean, that sounds kind of like obvious, but somehow it isn't.

Jill: I think sometimes people think people with chronic illness are just like, lying around peacefully, when actually, you're trying to manage this great internal turmoil and grief over it. Especially if you're a person who wants to do things and is ambitious. And so that's why I really love this seasonal stuff because we're not constant. My partner always says that I do things asymmetrically. When I'm doing better, I do things and I get more done, but there are periods where I keep trying but it doesn't work that way. Because my body has all kinds of plans that don't involve me.

Sonal: It's so funny because—especially as writers—it feels like we're supposed to be writing all the time. You're supposed to be doing things all the time, or we're supposed to have the next book out, and something always in the works, right? And to some degree, our minds are maybe always thinking about some story all the time. But then, when you're able-bodied, you may lie to yourself and think that that's actually possible. But when you are not, or you're having brain fog, or whatever, that's making it harder for you to actually keep your mind on these things—well, you can't live that lie anymore. But then I would think it almost feels like you're failing, when you're not able to write.

Jill: Exactly. And then being able to manage and reframe that feeling, because there's tons of chronically ill people that end up making beautiful things, it just takes them longer.

I mean, my life, despite the fact that we have no money, has a ton of privilege. I have a husband that does things for me. I work at home. So if I need to sleep in, I can. I don't have a lot of responsibilities other than helping with my in-laws, so I have a lot of privilege that allows me to do those things, but it's also come at a cost. I couldn't work a job outside of the house, not because I can't work, but because people wouldn't make the accommodations that I would need to be able to do that work. So much of this is about accommodations, and other people don't really give them to you. And I'm still trying to learn with my friends. I wanted to have friends over for a supper club when Andrew was away, and I just didn't have the spoons to be able to host. And I'm still not at the point where I can say, hey, I can open my door, but the floors haven't been swept. And you all are going to have to put the dinner together. I haven't reached that point yet, but I would like to. But it's really hard. You have to not do the things you think you're supposed to do.

Sonal: Or not do the things that you really want to do. Or have to accept that the way in which you can do it is less.

Jill: Yeah. Sometimes we have to teach people about our accommodations, but we have to be willing to speak up. I'm getting better at stating an end time. For example, “Would you like to come over between two and 4pm? I'm afraid I won't be good after two hours”, or “I can come to your house. But do you have a straight back chair? And do you mind that I’m going to need to bring my special whatever?”

Sonal: So, another question. What is the thing that you keep hitting up against?

Jill: One thing that I said about believing deeply in community care, and still not asking for what I need. That's what I'm really coming up against. And not even when people are looking at me. Like, I had to learn that with creative practice too, that if I can only show up for 15 minutes, it's still worth showing up. You have to give yourself the accommodation to say, “I can just do 15 today.”

The other one that I think is really huge for me and for others, is that chronically ill people are experts in wellness. You know if you're doing a disability claim, the concern is like, “Oh, you're faking?” But actually, what people are faking is being well.

And so we need to be seen and witnessed at our worst too. And I'm trying to learn that it's okay to be seen, even when I'm not well, which is really interesting when it comes to something like, “Can I be on Instagram?” I think that it's really hard for people to even understand what it's actually like, if they're only ever seeing me act well. So I think that that's the other thing for chronically ill folks. We often feel unseen, because we're also not letting ourselves be seen, because we're conditioned that you only show up when you’re well. That’s why my pain clinic group is so liberating. Because there's like, 50 of us on screen and half the people are lying in bed. Come as you are, because you're with a bunch of people that totally get that, and won’t ask “oh, what's wrong with her? She's pale.”

Creative practice does also require visibility at some point, so that can feel insurmountable, if you feel like you can't be seen. That's a hard one. That's the one that I'm always coming back to, that I'm allowed to show up, even when I'm not.

Sonal: I’m writing that one down.

Jill: And I think the other thing is, chronic illness is a bummer. Like I've been working on my synopsis for my novel, and my character is a lot like me—I'm also taking pains to make her a lot unlike me, but her basic bio looks a lot like mine, because those are things that I have a lot to say about. And then I was writing a synopsis, and I'm like, “How much of a bummer is it to say, managing chronic illness?” And people kind of stay away from it too. Whereas cancer is an interesting one, because I think cancer has a way where people know how to do that, with casseroles, or whatever.

Sonal: Yeah. Cancer has that battle model. We'll show up with casseroles and this will be overcome, and then we're done. And then there's no more casseroles required. Right? But chronic illness is chronic. So then you have to show up with a casserole, like, all the time?

Jill: Yeah. I had another note that I wanted to say. Pain plus resistance equals suffering. I get myself into trouble all the time with that resistance piece, whenever I desire for things to be different. I'm not accepting what is. And that causes a much bigger stress and angst state for me. So that's the other biggest lesson, that I cannot cure or fix myself, but I can manage my illness and support myself and be supported by others. And then that's the difference between clean pain and dirty pain. So clean pain says “this is happening.” And dirty pain says “why is this happening, make it stop!”

Sonal: So I guess for our questioner, part of this is just part of that long period of acceptance that this is how it has to be and how it has to go, and to find those tiny, tiny things that intellectually feel so useless.

Jill: And that's another interesting thing. We talked about barriers and how you to work within your energy envelope, like, dude, that's kind of what you have. But the one thing that can increase your energy envelope a little bit are glimmers. Are you familiar with the term glimmers?

Sonal: No, what are glimmers?

Jill: It’s kind of like the opposite of triggers. Triggers make you all activated. Glimmers are just lovely things that happen. Bits of joy, delight. You could get a glimmer from, reading a good book, a glimmer from the sunset. Being a glimmer chaser. That's why a life that does have joy in it is so important. So in terms of creative practice, I would say that if you can find the glimmers within your creative practice, it’s going to help you be more well. And that will legitimately physiologically and psychologically give you a boost. That's why finding joy is also an act of resistance. Because it makes us better and that is important.

Sonal: It's funny when you said finding joy is an act of resistance, in my head, it was like “Find the joy, motherfucker!” Like, “Fuck you, I'm gonna find the joy!”

Jill: Right? Exactly. That's what our creative practices are supposed to be doing. And, you know, I think one of my big things that I learned with this novel is that this novel, for me, feels very joyful. Whereas other things I tried to write before didn't. Writing a joyful comfort novel—with some serious stuff in it—this is giving me a ton of glimmers. I'm living in a fantasy world that feels really better for my brain than like, trying to write about family trauma or something.

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(I probably should have warned you that when Jill and I chat, we talk a lot. And maybe I should have just asked Jill to write this whole answer for me, because evidently editing transcriptions is something I spend a lot of time avoiding, but on the other hand, it’s my newsletter.)

But I hope that somewhere in there is something that can help you find your way to writing now that you’re in the After. It won’t be like Before, and so even if you have climbed this mountain, you’ll have to approach it as if you are climbing it anew. Some things will be familiar and will come easy; others, you will have to figure out a new way to do this.

You’re allowed to get frustrated but be as open as you can be to new possibilities.

You’re still a writer. You’re just learning to write with new constraints.

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Readers, whether you are coping with illness or not, I hope this has been helpful for you. Please let me know what you think in the comments.

Also, subscribe to Jill’s newsletter and maybe buy one of her incredibly gorgeous flower prints, and if you are a creator who struggles with actually creating, maybe reach out to her about working with her. Jill will be in touch when her time and energy allows.