To the passerby, and even to many people who know me quite well, I seem like a thriving and healthy 40-something professional woman, wife, and mother of two kids. And in the grand scheme of things, I am technically both of those things: thriving and healthy.
That said, I am EXHAUSTED. All the time. No, really. Not just mom-exhausted. Not just in-my-40s-exhausted. Truly, chronically, exhausted. I have an invisible chronic illness called idiopathic hypersomnia (IH), and there is no cure for it.
To say IH makes life — and parenting — challenging is an understatement. Left to my own devices and without medication, I resemble a zombie who is attempting to take a nap any chance I get. You see, IH is a chronic neurologic disorder that means I feel sleepy — all the time. It doesn’t matter if I get many hours of sleep or am able to take a nap during the day. No amount of sleep will allow me to feel rested.
People with IH can always nap. Pretty much on command. In fact, when you go for a clinical sleep study to determine what ails you, they study your sleep overnight and then keep you for the better part of the next day, making you take 20-minute naps and then waking you up. Over and over.
I found out I had IH sometime between giving birth to my son and giving birth to my daughter. They are three years apart in age. I had always been a napper and thought it was relatively normal to fall asleep as easily as I did and to love to take naps. When I started dating my husband, about eight years before we had our first child, he would joke about how sleepy I was and call me a hamster. He’d say that if we were ever stranded on an island, I’d just fall asleep while everyone freaked out. I’m not sure he’s wrong.
But after having our son, things took a turn for the worse and I started noticing that although I had struggled with driving and sleepiness in the past, now I was finding myself almost dozing at the wheel with my baby in the car seat. I got really scared and sought help from my doctor. I was immediately referred to a sleep specialist who administered a sleep study, ruled out narcolepsy, and offered me an IH diagnosis and a prescription.
The medication I take is considered a controlled substance, and it’s designed to help me wake up in the morning and manage to stay awake. Sometimes I need to take it a second time during the day so I can be a productive member of society and hold down a job in addition to living my life and parenting my children.
My chronic illness is invisible. Nobody can tell I have it. In fact, I present as energetic and outgoing, even though socializing with others or doing repetitive tasks — or driving more than 15-20 minutes at a time — drains me and often lands me on the couch for a two-hour nap. If I’m smart about planning my sleep hours, sticking to my plan, listening to my body’s cues around sleepiness, and avoiding my own self-inflicted guilt trips, I can manage to function without excessive napping. But all that is impossible to stick to on a regular basis. I know fellow moms might relate to some extent because we’re all tired. But as many of us IH people like to say, “My tired is NOT the same as your tired.”
My sleepiness is frustrating. It is embarrassing. It is unfair. It makes me wonder why I can’t be like other people. There is no rhyme or reason to it — at least not a rhyme or reason that has been figured out by medical professionals. There is no “right treatment” or cure. Add to that the fact that our capitalist society is not built to accommodate the needs of someone with IH, and you have a recipe for constant guilt at home and at work.
Having an understanding family or a flexible work environment doesn’t always translate to guilt-free living. Even my very understanding husband sometimes makes innocent comments about my constant sleepiness that, although not ill-intended, results in my negative self-talk. And if I’m honest, were it not for work-from-home opportunities since the pandemic started, I don’t know how I’d handle things at work. I have an amazing job with a wonderful team of colleagues, but the world is just not set up for me to feel comfortable being 100% transparent about a chronic illness and not feel guilty about it.
I wish this weren’t the case. I work on self-compassion daily. I’m better at it because I can structure my days with extra rest when I need to. But I really hope that with more awareness about my condition and other similarly exhausting and invisible chronic illnesses, the world will start shifting toward a more accommodating society. And maybe, just maybe, we will be able to take care of our needs without guilt ever showing up.
To anyone who identifies with this experience — regardless of the reasons why — hang in there. Listen to your needs. Take care of them. Stop the negative self-talk from the start (I like to literally visualize a STOP sign), and do what you need to do. You will be able to show up for your kiddos and others in better shape than if you ignore your needs. And perhaps people around you will notice and realize that it’s OK if some of us need to go at things a little differently; if we allow ourselves to do so, we show up as our best selves.