All the Rules Are Made Up

Claire Venus on Long COVID, caretaking, creative arts activism, and not doing whatever society asks her to

Art by Dan Segal

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.

Do you have an autoimmune disease, chronic fatigue syndrome, fibromyalgia, post-treatment Lyme, long COVID, or any undiagnosed collection of weird and persistent symptoms? Are you interested in being interviewed for this series? I would love to hear from you–fill out this interest form!

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Today we have the pleasure of hearing from

Claire Venus

, the woman behind Creatively Conscious. As a caretaker, Claire brings a different perspective to this series. She journeyed into the world of mysterious chronic illness when her husband Dave developed unexplained and debilitating symptoms in the fall of 2020, in the thick of COVID and just months before she was due to give birth.

Many aspects of Claire’s story left me dumbfounded, I couldn’t really fathom how she got through. It seemed to require from her some strength that is beyond human. Nonetheless, Claire’s energy and passion for creative projects shone brightly in our conversation, and it was clear that not only did her creativity survive this period but it strengthened. I was inspired by how Claire was able to hold both optimism and realism, surrender and hopefulness. 

Key themes from this conversation:

• When the available research is minimal or new, as in the case of long COVID, it is often hard to get any concrete help or clarity from doctors. This leaves us with two options: look elsewhere for answers–on blogs, on Twitter–or try to surrender to not knowing. There isn’t a right answer, but being aware of the option to surrender and not look for information can be liberating.

• Gentle arts activism is the idea we can push for change simply by coming together and sharing our voice and sharing how things are. We don’t often think of the words “gentle” and “activism” together, but in the case of chronic illness, and for anyone trying to live a slower life, this idea offers a way to engage meaningfully in causes we care about.

• All the rules are made up. The requirements of society are made up. When they aren’t working for you or your family, there is an option to reject the rules, to make up your own.

Rae Katz: Can you tell us what happened to Dave, and how it started? 

Claire Venus: Yeah, it was so mysterious. I was pregnant with my second child, Luna. It was about October time when he started feeling unwell and he was looking quite pale. My immediate reaction was, oh, yeah, but you'll be okay. He's a personal trainer and a yoga teacher, so he's really steeped in wellness–really good with all of the different ways that you can heal. But he just wasn't really getting better. At some point one of his clients who’s a nurse dropped something round, and she was like, “Have you had any bloods checked? You look a gray color, you know, things are not looking good.” 

I was really dismissive and impatient because I was pregnant, and I was like, no, no, everything's fine. I think I was in that space for quite a long time. The bloods came back and he was severely anemic, like on the cusp of needing a blood transfusion and everything was low. They tried him on iron tablets and said they couldn’t do anything else. So we were like, okay, well, all we can do is wait for an endoscopy and colonoscopy. We were also in this strange lockdown place with COVID, so we just wanted to stay as safe as we could.

And then the week Luna was due, we were getting a new fridge freezer delivered, and the delivery guy wouldn't bring it into the house. We had a tiny fridge before and we were trying to get set for Christmas time and Luna’s birth, for being a family of four. And so the delivery guy left it on the doorstep and we had to gather some neighbors together to lift the fridge freezer in the house. A week later, the neighbor who helped lift the fridge in was in hospital seriously ill with COVID. And, you know, your heart just sinks… like we hadn’t left the house… I hadn't even been to the dentist or had my hair done…

R: Oh gosh. I mean what are the odds? 

C: Yeah what are the odds. I couldn’t bear going to get tested, so Dave went and got the test. It came back positive, and we just knew I had it too. I’m about to have a baby–there were literally five days to go. Then my waters broke and that was it. I’m COVID positive at this point and so I just went to the hospital to give birth alone. It was just this whole intense, cracking open of self, because we were already so worried that something’s really seriously wrong with Dave.

R: I mean, any one of these events is a huge, intense, moment. And for you, they converged.

C: Yeah. So Luna was 10 pounds, huge! And then the recovery from that was brutal. I had lost a lot of blood, and I was coming back to a home where we were all excited to meet her but also running on empty. I was coming out of COVID, Dave was coming out of COVID, and we were still wondering what was going on with his health. That was the most I've been asked to step up in my entire existence as a human.

R: Wow. I can’t even imagine. So you have this newborn, and it sounds like Dave's health probably declined with COVID. Where was he afterwards?

C: So afterwards, we were still trying to figure it out. In February that year, he had the colonoscopy and the endoscopy and they very quickly found out that it was an h. pylori bacteria that had knocked everything off. The way that h. pylori works is it just strips out all of your good bacteria, so you basically have no good bacteria to break down any food. Your body is essentially starved of nutrients. 

So at that time, February, we didn't think he had long COVID, we thought it was the h. pylori. He had to have two types of antibiotics, and that was supposed to clear it up, but the second one gave him a huge allergic reaction. He literally stood in the bathroom covered in hives, white as a sheet. I’m there cradling Luna, on the phone trying to figure out what to do. And you know, the only thing the doctor’s office said was, “well, we'll just give you some antihistamines.” And he just said to me, “I'm not taking anything else. Claire, that's it.” 

From there, it didn't get better. There were similar symptoms to what he'd been feeling, but more intensified: tingling hands and feet, crushing pressure on his chest, heart racing like he'd run a marathon. And those first few months of going through that with the sleep deprivation of a newborn, and my healing, were just so, so intense, and really dark as well. When we were saying goodnight to each other, it was heartbreaking, we were sort of saying: “I hope I see you tomorrow.”

The doctors wouldn't do anything else. They were like; “the bloods are fine, everything's fine, you need to get some help for yourself and start grieving your husband.” 

I got on the phone to the practice managers at the GP and they said to me, “I can tell you’re very emotional, you know, obviously, you've just had a baby.” They were very dismissive.  It struck me that I had zero energy left to fight the pillars of society that prop up only those who thrive. 

Dave and Luna

R: What could be more natural in that situation than feeling overwhelmed and crying? But that's such a common story, particularly for women who try to describe these types of symptoms to doctors. Especially when the blood work looks fine, which is a blessing and a curse and a lot of ways.

C: Right. So I sort of figured out it was long COVID from reading Twitter threads, to be honest. No one else was listening to us, and all these people on Twitter had really similar symptoms. I thought he had gotten better from h. pylori, but then long COVID took over.

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R: Interesting. Was he able to get more attention for long COVID than the undefined set of symptoms?

C: So, no. There was a referral to the hospital to test his lung function. And they x-rayed his heart and found nothing. Then we had a panicked trip to the hospital because he'd collapsed in the garden. When we got there, they'd already scanned his heart a couple of months before. And the consultant just said, “honestly, there is absolutely nothing to tell you about your heart and your lungs, both are fine and there isn't anything else in a long COVID clinic like this to help you. So we have to dismiss you.” 

At this point, Dave’s perspective was: they can't help us. There's not enough science done. And this is why I took to Twitter to try to understand what people were doing. At that point, people were talking about going to Germany and having their blood cleaned, and there were osteopaths and floatation tanks and all the other kinds of stress relief stuff. And then there were certain drugs being mentioned. 

And I would ask him, I would say: “look there’s a few people who have said this drug helped, do you think we can ask for it? Can we try it?” I was just desperate to try and help him to heal. And then there was Luna, growing week by week and he was missing it. I would say, “can you hold her for a second?” And he would just look at me like so sad and so deflated, and just say, “I can't hold her.” 

R: It’s unimaginable to go through this with an infant. You wrote about that initial period, and you said your perspective initially was: “I could give him absolutely everything he needed and all my love and energy and beautiful food and make space for loads of rest and cut through all the crap life throws and it would make it totally better.” Then your conclusion is “it didn’t and I couldn’t.” And you talk about “severing your relationship with hope.” That phrase cuts very deep in me. 

I'm curious how you started to transition from: if we just try hard enough and be positive enough, we'll fix it, toward something else, and how did that transition happen? And what was the something else that you moved toward?

C: I remember we were sitting on the couch downstairs, and we were both in tears. We were beyond frustrated. And I said, “what if we were just to surrender, what would that be like?” And then Dave said to me, “I've been trying to tell you this. I've been trying to tell you this for weeks, months, maybe.” 

And I was like, I'm sorry. You know, I'm sorry. I'm sorry. Because I obviously was on a completely different path. Dave hadn’t really looked for help the same way I had. He looked more for solace. He found prayer and meditation. 

R: So interesting how people gravitate towards different approaches–looking for solutions versus looking for solace. In your newsletter, Creatively Conscious, you write about a slow life lived. I'm curious whether that was a theme in your life before this all happened, or whether that came from this experience.

C: My husband has taught me a lot about this. When we met he was working over in the Indian Ocean doing security on big shipping containers. His job was to look out for real life pirates.

R: Wow. 

C: Yeah, I know. So you're watching the ocean for well, mostly dolphins, the occasional pirate, but really not very many pirates. When we met, I was working in festivals and events, and we fell in love and it was a clash of worlds. He was watching the ocean, I was running around.

I continued at my fast pace, working in events, applying for funding, managing projects, giving it my all, and even though motherhood had shifted some of that it hadn't shifted all of it. It was the pandemic that shifted all of it. At the beginning of the pandemic, before Dave got sick, from like March to October–those were the best months of my life. I just realized how much energy I'd been pouring into everywhere else but here. We walked down the street and watched frogs. We played in a tent in the backyard with the kids. I just…felt alive. 

R: From your writing, it sounds like your creative work gives you energy, even during the times of intense caretaking. I’d love to hear how you incorporate your creative projects in a way that doesn't add to the pile of things you need to do, but it's actually energizing for you.

C: Yeah, it’s a lifeline. 2008 Claire would plug in everywhere in anywhere. But at some point I was like, no, no more. I wanted to do only what I could see was a need in the world, and I got really passionate about gentle arts activism.

R: Can you explain what you mean by gentle arts activism?

C: To me, it’s a recognition that we can actually move the dial and push for change by just coming together and sharing our voice and sharing how things are. Things like this interview. The whole reason I started on Substack was just to move away from social media and towards this other type of coming together. I was just like, I just need to write, I need to write how it is and how I'm feeling because I can't find any comfort anywhere else.

R: That’s lovely. So often creativity gets squashed in these intense periods, but for you it sounds like it kept you going through something extraordinarily hard. 

C: Absolutely.

R: Can you talk a bit about the impact that the intense caretaking had on you–on your mental and physical health?

C: There was a moment, about nine months after I had Luna, where I was winding the Hoover cable up, and you've got to just do this motion over and over. And one day I was doing it, and I was like, oh, this felt easy. That's new. This is me healing, and it’s slow, and society doesn't give space for that. And I'm guilty of that as well–trying to push through and still physically do the jobs around the house that Dave couldn't do. I would have a pain and go to my yoga teacher and say, “do you have any exercises? What can I do?” And she was like, “rest.” 

So that Hoover moment–it sounds so bizarre–but it was really poignant, physically embodying this moment of balance. I've always found it difficult to have a sickness, a cold or something. I'm always like, well, I've got things to do. So that gentler conversation with myself–even if it takes nine months or however long it takes–that’s ok. It doesn't make me less. I could have told more people how I was feeling and how much I was struggling in my body. 

R: What else was going on in your body during this insane convergence of difficult things?

C: I was having some other symptoms, like sleeplessness, then waking up in the night with my heart racing and mind racing–it felt like insomnia. Then there was something else–the only way I can describe it was I just didn't feel like myself. I ended up going to a doctor and she was very gentle, she said, “do you understand how hormones work?” And I was like, “Well, yeah, sort of.” And she said, “With everything you’ve been through your hormones might be out of whack. This sounds like early menopause, and it's not even really that early at 41.”

So it seemed like my body was just saying no, you need more than this. Then I had to figure out whether I was going to accept that this is menopause starting. And here’s what we did: we booked a holiday abroad. We were all round in circles, you know: Dave should go on his own, or I should go on my own, or I should just go with my daughter. And then we were like, no, we all just need to come together and make this work and just have ten days in the sun. So we did.

R: Good for you. It’s really hard to book a vacation in those moments. 

You've been through so much in the last three years. I'm curious how you think about the future.

C: I remember this time when I was homeschooling my son in the pandemic. I had a newborn daughter, my husband was stuck in bed. And I was on the phone to the teacher saying, “I can't do this.” We had all these schemes of work, and had to log into different things with all these passwords, and I was two weeks postpartum. I was really trying not to cry to his head teacher, but she could tell, and she said to me, “there are lots of people in your situation.” 

And I just thought: that's not good enough. I'm being asked by society to home educate my child, and I really want to do that, but I also feel helpless, like who's holding the mother?

That’s when I started to think: I'm going to do things differently, and I started saying that out loud, whether that's to a friend or whether it's on Substack, saying, “no, no, we get to choose, all the rules are made up. The rules are made up, society is made up, so what if we just say no.” 

Dave's been doing loads better since our holiday in March. There was a bit of a dip when we got back to the UK, but we're in summer now and he's been doing really well–he's taking the kids out tonight, and that's amazing. That just wouldn't have happened six months ago. There's a part of me that knows that even if things flip back the other way when autumn and winter comes, I've got more of a choice, I’m just not going to do whatever society is asking me to do.

R: I think this kind of reaction–saying no–is forced on many people by chronic illness. The question is, do you say “no, I can’t” with defiance, the way it sounds like you have, or do you do it kicking and screaming and trying everything to avoid it? It’s really cool to hear that framed as an inspirational choice, versus a failure.

C: Yeah. I just feel like it's about questioning what we're being called to do. Even if we're living a life that nobody else understands, and even if society at large doesn't make space for it, it’s still our life, isn't it? It's not anybody else's life, it’s ours.

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Meet me in the comments!

1. Have you been the caretaker of someone with a mysterious illness? Any tips for caring for yourself through the especially difficult times?

2. Do you have experience with an illness that doesn’t have much research behind it yet, like Long COVID? What is/was that like?

3. Have you ever had this kind of awakening or moment of defiance when you realize your life is just not working anymore and it’s up to you to start living for YOU, even if no one else understands?