“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health.
Kristin Houlihan, 38, got sick in March 2020 with a virus she assumes was Covid. She wasn’t sick, in a flu-like sense, for long. But then, some symptoms never went away: night sweats, extreme temperature swings after meals. She spent the next year or so living life, raising her children, but also noticing that some things were different. She’d come home from doing groceries and be “unusually tired,” or be shaky after taking her kids to the park.
“I assumed it was Covid anxiety, but my therapist and I concluded together that there was something physical going on,” said Houlihan, a writer based in Northern California.
Doctors came up empty-handed when she went to the emergency room for chest pain and shortness of breath throughout 2020 and into 2021. They found no answers. And then, in March 2021, Houlihan decided to train for a rock climbing trip with her husband. The more she exercised, the more her health spiraled downward.
“I gradually lost function and spent more time on the couch, doing less around the house and with the kids, until finally I got in bed in late March 2022 and stayed there,” she told STAT. “Only since then have I begun to improve.”
Over the course of the last few years, Houlihan has started writing about her illness (among other things) and sharing that work online — offering visibility and solidarity to others with long Covid, myalgic encephalomyelitis/chronic fatigue syndrome, and other conditions.
STAT interviewed Houlihan about her life as a writer, a mother, and a person learning to live with a disabling chronic illness. This interview has been edited for clarity and brevity.
You became chronically ill fairly recently, during the pandemic. How are you doing lately? What does your average day look like?
I’m improving in very small but very important ways, but I am still mostly bedridden and seriously disabled. On an average day I wake up between 5:30 and 6:30, whenever the first child wakes up. My husband gets our four kids ready for school; I help (from bed) with small things like brushing hair. Then, I have mostly silence from 8 a.m. to 2 p.m. while the kids are in school and my husband is working. I use this time for virtual doctor appointments, sleeping, and writing-related things. The afternoons are loud and busy when everyone gets home. I help with homework from bed, chat with the kids, and then use my power chair to join the family for dinner at the kitchen table. I can usually read to the kids between dinner and bedtime.
What have you been formally diagnosed with, and what does managing those conditions look like?
It’s taken a series of doctors over a year and a half for me to get diagnosed with fibromyalgia (which I’m not sure I actually have), myalgic encephalomyelitis (ME), POTS (postural orthostatic tachycardia syndrome), and long Covid. I also have mild sleep apnea and REM sleep behavior disorder. Managing these together is challenging, because, for example, POTS is helped by exercise but ME and LC bring exercise intolerance and post-exertional malaise (PEM), which means I have to limit exertion.
It’s meant finding my baseline level of activity — staying in bed — and avoiding mental, physical, and emotional overexertion. A trip out of the house to go to the doctor or even a couple of hours out of bed for a kid’s birthday party typically means days of recovery during which I experience dramatic increases in symptoms, including pain and cognitive dysfunction.
Over the course of these first few years with a chronic illness, you’ve started writing (or making your writing public). What drew you to writing as a mode of expression?
I’d been a freelance editor since 2015, working mostly with independent authors, but found I had to give it up as I got sicker. I was already part of a writing community through Twitter and was an infrequent blogger (mostly about books), and I sort of just shifted roles. Former clients became critique partners and cheerleaders, and now informal publishing coaches. I had all these new physical limitations that are hard to process, and I started dabbling in writing them down. I’ve always loved to read, loved what I could learn from others’ writing, and I already had a community, so it felt like a natural transition to start sharing my experiences through the written word.
Many people struggle to describe their experience of illness and disease, and find it frustrating how some things — pain or fatigue or general unwellness — evade description at a time when folks most long for clarity. How has it been for you learning to write about being unwell?
When I first started informally sharing my writing, I had a few people comment that my writing caused them to see chronic illness through a lens they’d never considered before, and that really struck me. It made me think that perhaps there was some value in continuing to write and in sharing more widely. I started out with very literal, “I”-centered poetry — more descriptions of interactions or experiences, slowly started to explore the emotional aspects, and now I’m working on putting physical sensations into words. I don’t think I’ll ever feel like I’ve figured it out, but I’ll keep experimenting as long as it helps me cope, and keep sharing as long as my messages continue to touch people. ME and long Covid are often described as invisible illnesses, and I feel compelled to bring the experiences of sufferers out into the world. I want people to see us.
“It’s meant finding my baseline level of activity — staying in bed — and avoiding mental, physical, and emotional overexertion.”
Are there aspects of your new life that you have found most difficult to write about?
The most difficult thing for me is to tell my story without telling stories that aren’t mine to share, particularly about my husband and kids. I try to stick to my experiences and emotions, without projecting onto them or violating their privacy. It’s a delicate balance and sometimes I mess up, but it’s getting easier.
I also find it difficult to write about cognitive dysfunction. My intellectual abilities have always been a big part of my self-identity, and cognitive issues feel more like a problem with me than physical disabilities do. I definitely feel more vulnerable when I share those kinds of stories. For instance, I recently wrote a poem that I love about the physical experience of a bad drug reaction I had, but I’ve been trying and failing for a while now to describe what’s commonly called “brain fog” in a way that feels authentic.
When it comes to living with your conditions, what is your latest struggle and what is your latest hope?
My latest struggle and my latest hope are intertwined, actually. I was recently prescribed a rather large course of medications and supplements to try, and I was sort of pie-in-the-sky hoping I’d get on everything quickly and feel better within a couple of months. Well, it turns out I had bad reactions to some of the medications and supplements, and have to take a more measured approach and add things slowly.
That said, the most recent drug I started has made a dramatic improvement in my cognitive function (I can answer 3-4 of these questions at a time rather than one) and sort of turned that previous academic hope of getting better into something that feels more real, more possible. So it’s become difficult to relearn and accept where my limits are. Assuming any of our other planned interventions help, I envision this adjustment period going on for a while. It would be awesome if the end result was a return to full health, but really, no one knows; ultimately, I’d like to get out of bed and be a more active part of my kids’ lives and take some of the responsibility off my husband’s shoulders.
“ME and long Covid are often described as invisible illnesses, and I feel compelled to bring the experiences of sufferers out into the world. I want people to see us.”
How has writing helped you meet yourself where you are, through the ups and downs of life with a chronic condition?
When I first started writing it was sort of sporadic and really unfocused. Over time it’s begun to focus more and more on living with chronic illness because it occupies so much of my headspace on a daily basis. My therapist really encouraged me to get the thoughts out of my head, and poetry became my vehicle. That said, I’ve also used it to push myself. For instance, for a long time everything I wrote trended dark; I didn’t realize it until I showed some poems to family and they started to worry about me! I then decided to specifically focus on capturing the moments of joy — ice cream on the porch with my kids, being able to braid my daughter’s hair — which helped me to really see them. Now, I write when there’s something I keep mulling over in my head, and I try to find a way to get it out; I’ve even started to branch out into other subjects, too, which has been fun.
You published a book of poetry in December. Can you share a poem you love, or a few lines?
I did! I pulled together a book of tweet-length poems I’ve written and published on Twitter over the past two years into a chapbook, called Lift the Mask. I originally intended it as a giveaway just for subscribers to my newsletter, sort of as a teaser for the longer, chronic-illness-specific chapbook I’m writing for release sometime next year. But then I decided to make it more widely available. So far, some of the most meaningful feedback has been that I wrote something accessible for other people with ME and long Covid cognitive impairment to read. It wasn’t intentional, but it’s amazing to have provided this! Since the poems are so short, they can be consumed one at a time in bite-sized chunks that are digestible for those who don’t have the ability to read longer-form work.
This is the poem from which I took the title of the book, which was written for the one-word prompt #ubiquity:
#ubiquity of brokenness.
Enlighten all to the
universality of struggle.
Lift the mask worn
by the apparently whole.
Each broken soul
will then find solace
in knowing it’s
Want to share your story of living with a chronic illness? Email [email protected].
Get your daily dose of health and medicine every weekday with STAT’s free newsletter Morning Rounds. Sign up here.
Create a display name to comment
This name will appear with your comment