No matter who you are or where in the world you live, this year has been one of a kind. I feel incredibly fortunate that not all of the changes I’ve experienced have been negative — I spent much of this year pregnant and feeling remarkably well (for me)! If all goes well, I will end this pandemic with an incredible prize: a much longed for baby.
the journey
Some of you may know that the road to get here was not uncomplicated. I have PCOS and as a result have never had normal cycles. After my sister’s devastating years of infertility and treatments, I started tracking my temperature and other hormonal symptoms and found that I too rarely ovulated. I also worried about my other diagnoses — even if I were to get pregnant, would childbirth be dangerous for me? Would I have the energy necessary to be a good parent? I remember breaking down into to tears at an EDS conference, wondering how I could possibly manage all of this well enough while also trying to have a job. In the end, I left my part-time job and spent a year caring for myself. During that year, I saw a million doctors, did hours of research, started an elimination diet and several medications, worked hard in physical therapy, and most importantly, I rested. I listened to my body and took care of its needs.
And it worked. I had energy. I could walk again. I could shower without fear of passing out. I could eat without causing a week-long reaction of migraines and GI disasters. And remarkably, my hormones seemed to improve as well! My cycles were by no means normal, but cysts became less frequent and ovulation began to happen more often than not. Interestingly, I also learned that many of my symptoms — especially joint laxity and neck instability — could be predicted by tracking my hormones.
pregnant!
And so it was that I came to this wacky year, healthier than I’d been in decades, and ready to take the leap into motherhood. I feel so lucky to say that it only took a few months to get pregnant. Other than some extremely painful cysts at the start of pregnancy (which required testing every few days to make sure it wasn’t an ectopic pregnancy), these last eight months have been blissfully normal.
I puke a lot, even in third trimester. I have dizzy spells and am even clumsier than my usual clumsy self. I have occasional headaches and bouts of erratic emotions. My joints feel floppy and my back is sore. But for the first time in my life, my symptoms are normal. It’s been such a joy to read about what to expect from my body and see my experience perfectly described! No more baffled doctors or unexplainable symptoms. No more fear of what the symptoms might mean. It’s so much easier to accept and move on when I know that the pain and nausea and every other sensation is simply my body acting as it should.
pregnant in a pandemic
It goes without saying that being pregnant this year has been pretty strange. No one sees my belly grow, since video calls only show my shoulders and face. I realized in a meeting the other day that no one knew I was pregnant — I had been working with this team every week, but it never came up in conversation and no one noticed any changes! Sharing with people I “see” so often that I was in my third trimester of pregnancy without their knowledge produced quite a reaction. I do feel sad sometimes that people I love can’t visit, can’t see my bump in person or feel my baby kicking. It is also scary to have to go into a hospital for appointments or interact with people whose masks are dangling below their noses. I’m too Zoom-fatigued to have an online baby shower, but a large in-person gathering feels daunting.
While not marking pregnancy milestones in the way I’d envisioned is tough, there have been some significant perks. Because I am teaching remotely this year, my morning sickness was actually less disruptive. I could simply turn off my video for a moment while students were busy, to run to the bathroom, or to lay down and nibble crackers to stave off a bout of nausea. I can’t imagine the daily nausea in my stuffy classroom, having to vomit in the tiny bathroom shared between staff and students. Being in my own space has been a blessing, no matter how challenging remote teaching can be. And the slower pace of life, the lack of pressure to go out and socialize, has allowed me to continue resting and listening to my body.
sick in a pandemic
Pregnancy aside for a moment, being chronically ill during a pandemic has been a fascinating experience. My immune system’s complicated status leaves me feeling both underprotected and terrified of an over-response, should I get COVID. Many patients with my conditions experience a permanent increase in symptoms after a bad virus or other infection. My own condition worsened significantly after a mild (and immediately treated) bout of Lyme disease when I was 11. I have a constant fear looming over my head, that all of the work I’ve done to become healthier would be undone if I got COVID. I picture myself unable to get out of bed, requiring reclining wheelchairs and feeding tubes, unable to care for my wiggly fetus. It’s terrifying.
So, I’ve completely isolated myself. I moved in with my parents to save money (and for extra support should my pregnancy or birth become complicated by my illnesses) and advocated my way into working fully remotely. I have spent more than a year in these three rooms, going out only for doctors’ appointments and outdoor walks with friends. When I do go out, I proudly brand myself as immunocompromised and make sure everyone around me is masked and distanced, despite these standards making me feeling judged or high maintenance.
The interesting thing about being a spoonie in a pandemic, though, is that while it can be extra isolating because we can’t take the risks that others may think are reasonable, we are champs at being isolated. I have spent long periods of time unable to muster the energy to go out or see friends. I have mastered the art of finding ways to fight boredom when confined to a single room (or bed). I have had to fight through fear of judgement to advocate my needs — although it can still feel triggery and painful, I am very practiced at it.
So when I hear the rest of the world struggling under the conditions of quarantine, I wonder if they could learn a few things from the chronic illness and disability communities. It has been comforting, if only for a little while, to know that others around us can empathize with being afraid for your health and safety, with not being able to go out when you want, with feeling alone even when loved. I hope some of that empathy can last. When vaccines have all been administered and everyone goes back out to their jobs and restaurants and beaches, I hope they’ll remember what it felt like, and give a little extra kindness to those of us who are still experiencing isolation.
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