Living With Chronic Insomnia: From Childhood to Now

For as long as I can remember, I have struggled with sleep. I have struggled with being tired, but not being able to sleep. With getting into bed, and being wide awake staring at the ceiling, trying to count stars or sing to my stuffed animals.

I remember waking up time and time again even as a child. I am 38 years old, and I believe I have lived with a sleep disorder for most, if not all, of my life.

When I was young, my doctor used to tell my parents that it was "extra energy," that I should run around more in the afternoons to tire myself out for bed. I was told it was growing pains, it was this, it was that, that it would "clear up" and disappear.

I vividly remember sitting in the exam room at my pediatrician's office, listening to this conversation, and all I could think was, "They don't believe me. They don't understand how I feel. Am I not describing the effects of poor sleep well enough to be taken more seriously?"

Friends, my sleep troubles did not disappear.

The early years of my insomnia

My insomnia related habits shifted as I went from middle school to junior high school to high school - as I aged, I automatically had more activities to participate in, I was away from home longer hours, and I would naturally stay up later to finish homework. I had hoped that all of these things would help my struggles with falling and staying asleep, but they didn't.

In this stage, I would find myself watching television on silent during the night, trying not to wake anyone else but to comfort myself. At the time, I felt like I had already asked for help from my parents, they took me to the doctor, and they firmly believed what the doctor stated. They minimized the situation, trying to convince both themselves and me that things would at some point change.

When I realized that wasn't the case, I realized that I had to find ways to comfort myself when I couldn't sleep. I didn't need anyone else awake with me, but I did feel like I needed something outside of my mind to focus on. This is where the tv on quiet came from.

Coping or thriving through college?

Insomnia always felt related to vulnerability to me - maybe because when I wasn't sleeping, I was always a little raw around the edges.

When I went to college, insomnia was sort of a gift. It allowed for late nights studying and writing papers, and even later nights of hanging out with friends and experiencing all that my college town had to offer.

There was even a chapter when I worked at a coffee shop requiring me to start shift at 4:30am. Many times I would find myself getting into bed just before midnight. I knew I could not just survive but often thrive on short bursts of sleep, so that is what I relied on for those years. That was a big shift in my perspective of living with insomnia - I had never thought of it as a benefit, only a hindrance.

Insomnia in my adulthood

I finished graduate school in 2013, which was 11 years ago, and in this "adult" chapter of my life, insomnia has gone through many rounds of "Will I? Won't I?" when it comes to sleeping. Every night when I crawl into bed, I wonder - will this be an agonizingly awake type of night, or will there be at some point some sleep, some rest, some time for my brain to power down and recharge?

About a year later, my primary care doctor provided a prescription for sleep medication, and for a while, it did work.

During this time, I was thrilled to find myself having an easier time falling asleep or staying asleep, but eventually the medication stopped working. I tried several different options - sometimes weaning off one to start another, sometimes with a pause in between, and each of those experiences have been somewhat short lasting. Ultimately, bringing me back here, to my adult self.

Coping with childhood versus adulthood insomnia

Today, I think of insomnia as a part of who I am. My childhood and adult insomnia have been similar in the fact that they both prevent me from sleeping or feeling rested, neither had a direct cause, it has been impossible to link it to one trait or part of my sleep hygiene or one moment in time. It's ebbed and flowed without warning or prediction for as long as I can remember.

Over the last several years, my sleep has been deeply affected by living with several autoimmune diseases, the medications (like steroids) that I need to take to manage those conditions, and by the consequences of experiencing several traumatic events in a short period of time. PTSD has been the biggest disruptor to my sleep - I developed an actual fear of falling asleep in the room alone. I would often wake up during the night screaming out from flashbacks I was experiencing.

I was lucky enough by that point to have a good psychiatrist who not only took over the sleep medication management, but prescribed a medication to help with nightmares and flashbacks. That is where I find myself today - on a prescription that helps but doesn't fully solve my sleep disorder problems, and on a medication that supports those sleep efforts at trying to keep my unconscious body in some sort of balance or homeostasis.

Living with chronic insomnia

The biggest difference I would say between my childhood and adult insomnia is that I know I live with a sleep disorder, and I no longer carry the illusion that, one day, I'm going to wake up after a great night sleep and be rested. I no longer think falling asleep might get easier at night. And I no longer work hard to change my routine or my sleep hygiene because, ultimately, I have decided to make peace with the fact that those things are band-aids for bullet holes. As an adult that has lived with insomnia for nearly my whole life, I have come to terms with the fact that it will always impact my physical and mental health in one way or another.

What about you?