Joy is Only For the Productive
Michelle Spencer on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Welcome to the Lady’s Illness Library. This is the first installment in a collection of stories from people who have gone on complex or unconventional illness journeys, like autoimmune diseases, chronic fatigue syndrome, fibromyalgia, post-treatment Lyme, long COVID, and any undiagnosed collection of weird and persistent symptoms. And by the way–all of these affect majority women, mostly for unknown reasons. A big shoutout to Sarah Ramey for inspiring the name of this collection!
As an avid reader on these topics, I have often come across writers who say things like, “I spoke with hundreds of women who have these illnesses,” and every time I think: I want to hear those stories! The internet is chock full of quick tips and tricks, and stories about how “I ate such-and-such a brand of supplement and everything got better, so you should too!” I have found this type of thing wholly unhelpful and demotivating as I have waded through my own health journey.
Here, I will try to provide an antidote to all of that. These stories aim to be exploratory and honest rather than prescriptive, exploring the human experience of murky chronic illness and what happens when a person is thrown into such difficult waters. We will honor the complexity of these experiences and the individual nature of each journey. We will also try to find the light and the humor within it all. I hope that these will spark thoughts, conversations, and ideas among the community of readers who are experiencing chronic illness, and increased understanding among those who are not. Having a multifaceted, sort-of-undiagnosed, debilitating disease is more common than ever, and yet still lives beneath the surface of our culture. Let’s change that.
Are you interested in being interviewed for this series? I would love to hear from you–please fill out this interest form!
I am so grateful to our first interviewee,of Armchair Rebel. Formerly working in the funeral industry, Michelle’s myalgic encephalomyelitis/chronic fatigue (ME/CFS) syndrome has put her on medical leave for the past year. I couldn’t have asked for a more thoughtful and honest conversational partner to kick this series off, and she made me laugh even while describing unimaginable trials. I was stunned at Michelle’s generosity in sharing all the ins and outs of her story, and there are moments in here that I will remember for a long time. Michelle was generous enough to dial in in the early morning from Melbourne, Australia.
You can find additional resources about Michelle’s illnesses at the end of the interview.
Rae: Let’s get into your story: what is your illness, in your own words?
Michelle Spencer: My most recent chronic illness is Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I’m a beneficiary of good primary care…my doctor has known me for nearly twenty years, and I didn’t face the barriers to a diagnosis that a lot of people with ME/CFS do. I had previously had episodes of post-viral malaise, where you get over the virus and the fever and all of that, but you just kind of stay really unwell for awhile. But I’d always recovered. The most recent time was two years ago, just as COVID hit, I got shingles, which is the reemergence of the chickenpox virus from the childhood illness, and that laid me quite low. For several months my eyes hurt every time I looked at a screen. That was my first real taste of severe disability, lasting for a few months. But it got better. So I started working 60 hours weeks again…which…you know, in retrospect I regret.
R: Ah, well, I can really relate to that.
M: So this time around, in January of last year, I got really sick with a virus. It was in the middle of another COVID reemergence, and you couldn’t get a test for love or money. Even our government was saying: don’t go to hospital unless you can’t breathe or are having a heart attack. So we dealt with it at home, but I was sick enough that I would have gone to hospital normally. My doctor had to give me the anti-nausea tablets you usually give to people who have cancer, just so I could keep water down, because she was so keen to keep me out of hospital. She said, “whatever you’ve got, you don’t need COVID as well.”
So, you know. We survive. And then we go on. I got to a plateau, and then I never got any better since then. I had googled my symptoms—like extreme fatigue after any exertion, brain fog, muscle pain, dizziness, speeding heart rate, sore throat, digestion issues—and I knew a couple of people with ME/CFS, so I had some idea of what might be wrong, and I was… concerned. I remember going to my doctor and saying, “so what exactly is the moment where post-viral malaise becomes chronic fatigue syndrome?” And she just looked at me very compassionately and said, “oh honey, we’re there. We’ve been there for awhile.” And I was like, ohh. This is my new normal. And then there were feelings, there were a lot of feelings. Relief because, I guess, yeah, the shoe has landed. But also, “no, wait, no that can’t be right! But I can’t argue because you’re my doctor and I trust you!”
R: It sounds like you have a unique relationship with your doctor. You mentioned that she knew you for twenty years—that alone, at least in my world, is incomprehensible!
M: Yeah, this type of doctor isn’t that common here either, and I thanked her later for helping me over that threshold so well and being accepting. And she was kind of pleased and kind of affronted, if that’s the right word. She said, “I’m a doctor and I’ve got a few years of experience. After a while you know your patients, and you just know.” She said she calls me one of her “sickies”—people for whom she didn’t have a name, but there was something going on where they needed a bit of extra care.
R: That really speaks to the value of having a long history with your primary care doctor. You mentioned that, in addition to panic and fear with that diagnosis, you felt a sense of relief. I was wondering if you could talk a little more about that relief, because it seems like an unexpected response to a diagnosis like that, but also a common experience in these situations.
M: You know something’s going on, even if you don’t have a name for it. We’re all very good girls. We’ve always been able to dig deep and carry on and be gritty, and of course that is the opposite of what is required in this moment. So there’s the relief of like, there is a reason, I’ve been told I’m not imagining this. I guess it’s relief because you’ve stopped gaslighting yourself: that voice in your head that’s been going: stop being lazy, get off the sofa, get back to work, I know your eyes start going bright red and blood shot when you’ve been looking at the screen for two hours, but that’s just you being weak.
R: “Most people can handle it.”
M: Yeah, most people can handle it, most people don’t have these problems. Why is it so hard for me? And of course, the minute the ego feels that it is defective, it goes “no I’m not, I’m strong. Get back up there and just hammer on through.”
R: I was really struck by a line in one of your recent essays. You wrote: “unless I perform as if I don’t have these limits, my worth and my welcome is on the line.” This seems like an underlying driver for the absurd levels of pushing through. If you don’t perform, are you going to be a valued and welcomed member of society?
M: Absolutely. Before all this, I had chronic migraines. Initially I had the odd migraine occasionally, then I would get them once a month. Then over the course of a few years, in particular as I headed into perimenopause, they got feral, I mean really bad, to the point where I had back-to-back multi-day migraines, and it was hard to tell what was the little breaks between migraines. Life got very difficult there for a while. A couple times in the past I tried to volunteer when I was between jobs, but because of the migraines I couldn’t guarantee the ‘four hours every other Thursday’. One time I was thrown out of a writing group because I wasn’t filing my stories regularly enough. So belonging, even outside of work, becomes difficult.
Then eventually, I had a bad enough migraine I ended up in an MRI machine because I was having some neurological symptoms. On that occasion I lost feeling in half my body for the evening. I was waiting overnight to go to the doctor and see what’s going on, but I was a bit afraid to go to sleep to be quite honest, in case I didn’t wake up. So I lay there quietly trying not to disturb my husband. And I later found out—like months later—that my husband lay there very quietly checking that I was still breathing and not disturbing me so he wouldn’t wake me up all night. So it was a very Gift of the Magi moment.
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R: Wow, what a story. And what an experience. As someone who has never had migraine, it is hard for me to even imagine what it is like. I think that’s common with these types of illnesses, and maybe all illnesses—it’s very hard to relate if you haven’t had a similar experience, which increases the isolation. I’ve noticed that in your writing you refer to your illness/disability. Can you talk about your choice to use the word disability?
M: Sure. I’ve started using “disability” partly to normalize it, and because I am less abled than I was before, but also because it’s such a scary, scary word. Oh, people’s pity. I mean, God bless people, they love you, but they treat you like you’ve become a useless thing. They don’t mean to. And I’ve probably done it to others in the past. But that does not help.
R: I don’t think we have the language or skills to handle this topic in our culture.
M: Yes. At least I work in the funeral industry. We actually have an understanding that bodies actually stop sometimes [laughs].
R: That’s a really interesting aspect of your story—that you were working in the funeral industry. I know you’re also working on a book about how working in the death industry taught you about life. I am curious if and how that experience informed your reaction to this diagnosis and health degradation.
M: I think a lot of my reaction just comes from that whole good-girl thing. From the inside it feels like I’m lunging around from crisis to crisis trying to show up and not get caught out. But I’ve always been praised for being capable and adaptable. I kind of thought, “wow, I’m getting away with it.”
But when I started working in the death industry and being much more involved on a day to day basis with the bereaved, it changed something for me. I started arranging funerals accidentally because we were short staffed during COVID. The first three funerals I arranged were for women who were younger than me. I’m only 55 now. I mean, you know that people your age go out before you, but I just felt like the universe was maybe giving me a little bit of a nudge on that.
So I had already started to reevaluate this whole course of the rest of my life and how long that might be. You know, I fully intend to live into my nineties, but the ball is not entirely in my court. Even so, the only reason my doctor got me to stop working is she pretty much ripped me a new one. When I broke down in tears and asked for medical leave, she told me: “I’m only writing you the certificate if you promise me you will actually take all the time off, you will do no work. You will not manage the transition of your team, you will not troubleshoot your own medical leave.” And I looked at her—I was quite shocked because she’s very gentle—and I went, “what do you mean?” And she said, “Michelle if you don’t stop, you are going to be permanently disabled, and worse than you are now, and I don’t want that for you.”
R: Wow, fierce. I love that, and I’m jealous because I haven’t had a doctor like that. One of the common problems for people with these illnesses is you’re seeing all these different specialists, and they aren’t coordinated with each other, and oftentimes they don’t know you that well. I’m curious what your experience has been with specialists and coordination, particularly in the context of Australia’s universal healthcare, and how much you feel like you have to be your own expert and advocate.
M: Because this is not my first rodeo, I know that I have to manage my own wellness. The reason I have this doctor is that I had my first weird illness that knocked me flat when I was nineteen at University. I saw a couple of different doctors who told me that I was imagining things, and asked if I had just broken up with my boyfriend or if I was stressed about my exams. It happened that I had taken the day off to go get my eyes tested, and the optometrist couldn’t take a reading because I was so ill that the muscles in my eyes were apparently just randomly finding depths of field. And he asked me, “oh my God, have you just gotten out of hospital?” And I said, “No.” And he just looked at me and said, “you need to go to another doctor dear, you’ve been very sick, the eyes don’t lie.” So I went off and found a doctor who would listen. You need a doctor who knows you. Even if you’re only going in for a Pap smear every couple of years. You just need to build that credibility.
I still get terrified seeing a new doctor. I was recently referred to a rheumatologist, and I even had a recommendation through someone I knew saying he was the best rheumatologist for ME/CFS. I was still so terrified before I saw him that my blood pressure was spiking. He said to me, “oh, your blood pressure is pretty high,” and I said, “that’s just because I’m meeting you for the first time.”
R: That’s so relatable to have the feeling of fear going into a new specialist. It sounds like ultimately, you have had to be your own expert and advocate, and obviously that takes a ton of energy at a time when you don’t have a lot of energy.
M: And we don’t have a lot of self faith in that moment. Our identity has just taken a hit. And then suddenly we’re being harshly judged at a time when we’re also really questioning our judgment.
R: This question of identity is a great place to land. I think one of the signature experiences of this kind of health crisis is it completely pulls the rug out from under your identity. Maybe formerly you were a runner who worked a lot and was ambitious, and then suddenly none of those can apply anymore. That process involves a lot of grieving. I’m curious to hear about that grief process for you.
M: I sometimes feel like I’ve died and become a new person. Certainly that identity—Before Michelle—she doesn’t exist anymore. I can’t do her anymore. I sometimes feel like she’s haunting me and getting me into trouble. You tend to want to do the things you’ve always done, like with friends and family. Someone will say, oh, we’ll just go over here, and we’ll just go over here, but I know, when I’m focused, that there is no spontaneity. The new spontaneity is fully preplanned, because my window of tolerance is so narrow. But you know, once I’m out with people I’ve known forever, it’s really hard for me to maintain my boundaries, because it’s like old me takes over and she just wants to do her shit. And I’ve got to be the fun police for everyone—my partner, my family, my friends, and for my old self.
And then there are occasionally times when I’m just chugging along in my new life in my new groove and I think, “you know, this is kind of ok. If it could just be like this it would be ok.” Because I struggle with even being allowed to have joy in my new life, particularly when I’m facing the fact that I might have to go on disability. You’re allowed to be on disability only if you’re really broken. You’re not actually allowed to live a good life.
R: This idea that if you’re sick enough not to work, then you don’t deserve joy…that’s a profound statement. It resonates with me, and I hadn’t thought about it in those terms. Joy is only for the productive.
M: Yeah, rest and joy. We have to earn rest. We also have to earn joy. It sort of explains how we treat old people too. Because they cease to be productive.
R: And we’re all doomed for that unproductive state. Look at me—I automatically used the word “doomed.” We’re all destined for that unproductive state at some point. And the question is, can we accept that? And can we accept people who are in that state at various stages of life for various reasons? I think it’s an important question that has a really sad answer right now, but maybe we can shift that a little bit through the next generation as people become more aware.
M: I hope so.
R: Me too.
Resources from Michelle
Australian Migraine Association: Migraine basics from the Australian migraine organization
The Keeler Migraine Method: This book on migraine helped me a lot more than most.
Health Rising: Science-led and lived-experience community recommended by my rheumatologist. Some patient stories. A lot of frustration along with hope.
Study on ME/CFS awareness: A summary of a study showing extreme lack of awareness among doctors about ME/CFS
A Chronic Entrepreneur: Inspiration that you can be an entrepreneur or business owner with a chronic illness
Gauri Yardi: Gauri’s work on ‘Creative Burnout’ has helped me slow down and still get (some) things done, while being kinder to myself. Highly recommended for all
Feminist Survival Project: A useful concept when dealing with illness that slows you down, told with humor
COMING TOMORROW: Enjoy this brief excerpt from my upcoming essay on starting a company in Silicon Valley as someone who felt like a complete outsider…
The belief in the Valley, I’ve come to see, is that people like this can in fact start a company where they don’t know shit about shit, can learn quickly and adapt and bring new creative ideas to the endeavor, and, once in a while, they can be very successful at it.
I was not one of these people. I was very good at applying to highly selective organizations, and I was very good at doing homework, and I was very good at exams. I was highly practical in my evaluation of what is possible in the world, I was somewhat risk averse, and I leaned pessimistic.
Eventually I did learn, in the great meat grinder of Silicon Valley, how to believe I could do things I had never done with no real evidence to back up that belief. But that would not come for a long time.
So I set out to raise two million dollars. It was early June, and I had heard that VCs all vacation in August. The clock was ticking.
Meet me in the comments!
Have you ever gotten a diagnosis that incited both panic and relief? What was that experience like?
Do you have any tips for not gaslighting yourself about your pain, even if you haven’t received a diagnosis?
Do you ever feel like your illness is compromising your ability to be a “valued and welcome member” of society?