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Sleep Deprivation, Chronic Illness, and Early Parenthood

Chronic Illness, Infant Mental Health, Infant Sleep, Nurtured Parenting, Parental Brain, Parenthood, Parenting, Postpartum, Uncategorized / / 6 minutes of reading

Before I had a child, sleep was non-negotiable for me. I needed a minimum of 7 hours to function — really closer to 7.5 to 8. Under 7 and it was not pretty. Under 6 and I genuinely could not function. This really worried me—how would I be able to respond in a way that was aligned with my values for care and connection to my baby, day or night, if I was not getting my usual sleep? As someone with hypermobile Ehlers-Danlos Syndrome, MCAS, POTS, and PMDD, I had managed my body carefully around that need so that I could be functional for years.

Long before I had a kid, a friend talked about early parenting exhaustion in a way that implied without meaning to that whatever I was already living with from my chronic illness was no match for the exhaustion from sleep deprivation of new parenthood. I took a little offense to that, and I filed it away as something I’d judge for myself if and when the time came.

My assessment when I finally got to experience it for myself: they’re both crappy, but they’re different.

Chronic illness fatigue for me is the kind of tired where there is no amount of rest that will touch it. You sleep and you’re still tired. Your body doesn’t recover. New parent exhaustion for me was different. If I could get more sleep, I would feel less tired.

Identifying that difference was important to me. It didn’t make new parent exhaustion easy. But it meant I was dealing with a different problem than the one I’d been managing for years, which meant it could be approached differently.

On becoming a napper

I’d never really been a napper, instead a full unbroken night of sleep was how I got my rest. In early parenthood, somehow that changed. I found myself napping during the day (actually sleeping when the baby slept!) which I had assumed would be impossible for me. And, over 24 hours the rest added up. I relished those daytime naps.

Could it have been the parental brain changes that come with birth and bonding? The hormones of lactation? The suppression of ovarian hormones that happens during breastfeeding and how that was impacting my chronic illnesses? Just so exhausted from broken sleep at night that my body relented and I could nap during the day? Probably some combination of all of it. Something shifted in what my body was capable of. In fact, I was able to respond to my baby with care and connection even with unbroken nighttime sleep.

I eventually learned the neuroscience of how the parental brain changes, and knowing this can make a big difference (especially for disabled and chronically ill people who are worried about sleep): the parental brain actually changes to support your capacity to respond to your baby. The brain is most plastic during pregnancy through the first year postpartum and we can work with that plasticity to support the parental brain.

How we designed our sleep

We also didn’t approach nighttime sleep the way mainstream new parenthood in this country assumes you will.

Safe bedsharing, done well with current safety guidelines, can mean more sleep for everyone while providing the oxytocin and connection that support both your stress system and your baby’s. For disabled and chronically ill parents especially, even if you never plan to bedshare, it’s absolutely worth understanding this option exists and the evidence behind it, and how to do it. (I always say the best time to learn how to safely bedshare is before you need it rather than at 3am when you’re sleep deprived, desperate, and more likely to make unsafe choices).

Here’s what our sleep setup actually looked like:

In the beginning, we started with a bedside cosleeper bassinet in our bedroom right up against the bed. When I switched to exclusive pumping, we divided the night. I took the first half to sleep since I had to wake to pump anyway in the middle of the night, my partner took the second half for uninterrupted sleep. At that point we moved the bassinet to another room where the person on call slept on a futon next to the cosleeper. Each of us got some uninterrupted sleep every night. We then moved to a floor bed in that other room and started bedsharing, and it was at this point we all actually started getting some real sleep.

Source: The Beyond Sleep Training Project

Eventually we converted our up to that point unused crib into a sidecar cot right up against our bed (see image to the right for more information from The Beyond Sleep Training Project) and all moved back into the bedroom together: bedsharing with our baby in our bed and using the sidecar cot right up against our bed when needed. Over the years, the amount of time our child spent in our bed versus the sidecar cot has shifted and now at almost 3 years old, most of the night our kiddo is in the sidecar cot, joining us in bed usually somewhere between 3 and 5am (typically after a middle of the night pee in the potty).

We hadn’t initially planned on bedsharing. But I’m so grateful that we quickly learned how to do it safely because while we had problem-solved a way to each get some uninterrupted sleep every night, bedsharing allowed us all the ability to get better sleep together. In a future post I will share more about why better sleep is not the only reason to bedshare either (though it is a great one!).

We were still more tired than before we had a baby, but not as tired as we were before we came up with this solution (because as we know, becoming a parent means choosing to change). We designed it around what we needed, and all of us got more rest.

If I had to do it again, I’d start with the sidecar cot bedsharing setup from the beginning. Littler Sparklers has a great resource on realistic expectations for infant and toddler sleep and preparing to bedshare.

What I’d want you to know

If you’re a disabled, chronically ill, or neurodivergent person who is worried about sleep, your body may surprise you. Mine did, in ways I can’t fully explain and didn’t expect.

You will still be tired. And the tired you’re imagining right now, from the outside, may feel different once you’re actually in it because your brain will be different, and because you can design your sleep situation (safely) rather than defaulting to whatever the mainstream version assumes.

Source: LittleSparklers.org

Designing-differently is what we’ve been doing our whole lives as disabled, chronically ill, and neurodivergent people. It’s also what I help people do in Body Compass™: Path to Parenthood: building a real plan around your actual capacity, before the baby arrives, so you’re not figuring it out at 3am.

If you’re preparing for a baby and want a starting point that was built for folks with bodies and brains outside the status quo, The Baby Registry Nobody Made For Us is a free guide with a whole section on sleep setups. What actually helps when you’re managing a chronic illness or disability alongside a newborn.

Get the free guide

And if you’re looking for support across the whole path (conception, pregnancy, and early parenthood) that’s what Body Compass™: Path to Parenthood is for.

Learn more and apply

What the Dominant Narrative Misses

Birth Control, Body Literacy, Chronic Illness, COVID-19, Cycle Health, Disability Justice, Fertility Awareness, Infant Mental Health, Nurtured Parenting, Parental Brain, Parenthood, Parenting, Uncategorized / / 5 minutes of reading

What do disability, body literacy, fertility awareness, pregnancy, parenting, attachment, public health, and caregiving have in common?

I’ve been trying to articulate the answer to this question for myself for a while now. These fields can seem completely unrelated on the surface, and they’re made harder to see clearly by the layers of loud political ideology that get wrapped around each of them. I worry sometimes that people encounter my work in fertility awareness or responsive caregiving and think, “that’s some tradwife content I am not interested in.” I get it! These bodies of knowledge have often been co-opted, re-packaged, and handed back to us inside a political story that a lot of us don’t agree with and don’t recognize ourselves in. This often prevents people from accessing or practicing what could be providing a real benefit to them, or prevents them from seeing the thread underneath all of these that I think ties them together: care and interdependence.

Disability justice centers care and interdependence. Attachment science centers care and interdependence. When you strip away the dogmatic ideological packaging from body literacy, parenthood, responsive caregiving, and public health, each of these takes human needs seriously and begins with the reality of human bodies and relationships rather than what productivity and capitalism demand.

Not one of us came into this world without needing care. It’s literally how our species has evolved to survive and thrive and that need doesn’t disappear. We all begin as beings who rely completely on others for survival, and most of us will arrive back there at one or more points in our lives. At illness, disability, chronic illness, childhood, elderhood, grief, postpartum, parenthood, crisis, mental illness: all of these require care and interdependence.

Public health makes this explicit in a way the other fields sometimes leave implicit: our actions affect each other. A mask, a vaccine, staying home when you’re sick aren’t just individual choices. They exist inside a web of relationships. The people who have made this most visible are disabled people and immunocompromised people. We’ve had to articulate, loudly and repeatedly, that our safety depends on the choices of people who are not us.

Disability communities often reach a point, especially for people who become disabled after living as nondisabled, where they realize that worth does not equal productivity. You are worthy as you are. Rest is not something you earn. It’s a biological need (we are not machines!). In fact, disability justice calls out these exact principles: interdependence, recognizing the wholeness of each person, and anticapitalist politics.

Parental brain science shows that becoming a parent literally changes the brain. It’s pruned and reorganized in ways that increase attention to relationships, caregiving, emotional attunement, and social connection. The parental brain is optimized for caregiving, not maximum output. (Oh hello! Now it makes complete sense why my brain felt so completely different when I came back to work from parental leave.) Meanwhile, the culture around new parents says: bounce back. Get the baby sleeping independently. Get back to work. Get productive again. The parental brain is in some ways a biological rebellion against those capitalist demands.

Attachment science tells us that a securely attached child doesn’t develop through being efficiently managed. Secure attachment is built through thousands of moments of connection, co-regulation, responsiveness, repair, and presence. None of those are easily measured nor show up in any productivity metrics. And yet they’re among the most important things we as human beings can do or receive. Holding a crying baby, sitting with a dying elder, listening to a friend, recovering from or living with illness, resting, building trust, co-regulating are, by and large, in capitalist culture, treated as interruptions to life rather than as life itself.

None of us are units of productivity. Not babies, not children, not disabled people, not elders. Heck, not even nondisabled adults, no matter how hard everyone pretends otherwise! Everyone thinks they’re invincible until they’re not.

The fertility awareness method (FAM) gives people accurate self-knowledge to make decisions about their reproductive lives, including the decision to end a pregnancy. Knowing your body well enough to detect a pregnancy at five weeks, before a six-week abortion ban kicks in, can be life-saving knowledge. FAM connects directly to three of the four tenets of reproductive justice: the right to have children, the right not to have children, and the right to bodily autonomy and sexual freedom.

FAM also shows us that our bodies respond visibly to how we’re living. Whether we’re sleeping, eating, under stress, being nurtured or ground down by hustle culture, it all shows up in our cycles. FAM is a monthly report card on our own wellbeing. Using FAM we can learn to read what our cycles have to show us about our own well-being and see in real-time how living in a care-centered culture (where we are nourished, rested, connected, etc) vs a productivity-centered culture (where we are burnt out, etc) affect our reproductive health.

Disability and parenthood are both often viewed through a deficit lens: how will you manage, how will you keep up, how will you stay productive enough? (Fuck that.) What I think disability and parenthood reveal is that as human beings we are relational, that we move through seasons, that capacity fluctuates, that care is non-negotiable, that there is wisdom in slowing down.

When I sit with care-centered values it’s obvious to me that disability justice, parental brain science, responsive caregiving, reproductive justice, public health, and body literacy all draw from the same well. No wonder they seem connected to me! They arrive at similar conclusions centering care and interdependence from different starting points. These fields of study are not some tradwife bullshit (though aspects of these fields get co-opted and distorted with dogma from the right regularly). They’re all asking a version of the same question:

“What if we organized our lives around what human beings need, rather than around what makes human beings most productive?”

The fourth tenet of reproductive justice, “Safe and supportive environments for families,” is one part of the answer. A girl can dream.