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I’ve long managed my own condition, but now with my daughter facing her own, we’re discovering plains anew, in spite of our genes.
I have narcolepsy. Or at least I think I do. I’m currently sitting in a bed with ten different leads attached to my face and scalp to measure the periods of REM cycles I experience when I sleep. It’s called a sleep study. Two months ago, I sat in a windowless office discussing my extreme daytime sleepiness with a neurologist. After years of doctors dismissing my symptoms because I was physically healthy – doctors argued I was tired because I was a mother and, for many years, a student – I begged for a referral to a sleep specialist.
Exhaustion has been my invisible twin since I was five. My memories of kindergarten are hazy with lethargy. In class, the sun warm on my back, the smell of craft paper slathered in blue and red paints, I lay my head on my desk and doze. In the car – to and from school, the grocery store, post office – I’d fall asleep in less than two minutes. There is a video of me age 11 sleeping with my head propped on my hand. The person taking the video is throwing something at me and tittering behind the camera, trying to wake me up. But I can’t, and I don’t.
At sleepovers with friends, I embarrassed myself with a litany of odd behaviours. I woke up chewing on a remote control. I yelled obscenities in my sleep, startling my nervous-giggling friends. Once, I woke up from a nightmare to find myself sitting on my cousin’s chest, my hands wrapped around her neck. At high school cross country meets, my eyes dry and aching, I would find a quiet place in a sunny spot and drift. When I awoke, all my friends would have left to watch the races. I wandered the tournament grounds looking for their faces, their green jerseys. At a family reunion last year, 13-month-old daughter on my hip, I staggered drunk-like around my in-law’s lake cabin. Around noon, I collapsed onto the nearest bed and slept for an un-refreshing two hours. I awoke, irritated. My body ached with heaviness and my head pounded. Sleeping, infuriatingly, did not reduce my fatigue. When I joined my family, apologetic smiles were aimed in the direction of my sleepy eyes, my groggy voice. Advice was tossed around me. I should eat better, take vitamins, exercise. If the baby was sleeping through the night, why was I still so tired? people asked. Had I been to see my doctor?
When I sat in the room waiting for the sleep specialist, I was agitated. For weeks I’d considered cancelling the appointment, citing reasons like my unwillingness to meet my insurance deductible, and my busy schedule. Really though, I couldn’t withstand the shame of another physician discrediting my symptoms.
The doctor entered, all smiles. She did not look weary to see me, like my primary care physician often did.
“So, you were referred for sleep apnea?” she asked, taking a seat and pulling up my chart.
“No,” I corrected her. “I know I don’t have sleep apnea. I’m tired all the time.”
She hummed into the screen.
“And how long has this been going on for?”
I told her I’d been born tired. She ran me through a series of questions, a repeat of the forms I’d already filled out and handed to the nurse. Was I sleepy while driving? Yes. Did I take frequent naps and not feel refreshed? Yes. Did I ever have sleep paralysis? Yes. Did I hallucinate while falling asleep? Yes. Did I ever feel like I was living in a dream within a dream?
“When the movie Inception came out,” I said, “I thought, Yes, this is my life except Leonardo DiCaprio is missing from it.”
She laughed, and I liked her a little better.
“This is going to sound strange,” she started, “but I think you have narcolepsy.”
“Like in the movie Rat Race?”
She explained that the movie depicts a character with an extreme form of narcolepsy, but this isn’t an accurate representation of the general populous. It’s a comedic misrepresentation designed to illicit laughs. Everything I’d described to her was symptomatic of narcolepsy. She referred me for a sleep study and an MSLT (Multiple Sleep Latency Test). The MSLT is designed to measure the length of time it takes for a person to fall asleep. It would also show whether I went into a REM cycle during a nap. I would be asked to fall asleep and then be awakened 20 minutes later. Following the overnight study, the MSLT would take up to 10 hours and would include five scheduled naps. A person with narcolepsy will enter REM at least twice during the naps and fall asleep in under eight minutes.
“So, I might actually have a diagnosis?”
“Yep, you might.”
At the end of the study, the technician told me I would have results in ten days. I didn’t care what I had, I just wanted to know that something was there. “You definitely have something,” the technician said.
We like to name and fix things. At the first sign of a cough, the rosy kiss of fever, we are clickity-clacking symptoms into a search engine and waiting for a name to tag to our mysterious illness. Amidst the symptom checker tools of the Internet are countless articles begging people to stop self-diagnosing. One article states that knowing our bodies isn’t enough; people need a mirror to see themselves more clearly. Doctors are the mirrors, the author argues. We simply do not have all the necessary information to rule out or invite disorders.
I believe most people are aware of the dangers of self-diagnoses, and yet they continue to rely on it. According to another report, in the US alone, 6 million people access a symptom checker every day. Multiple theories for this behaviour exist, including an overburdened healthcare system, and poor patient-doctor relationships – patients don’t feel like they can trust doctors. The goal of using websites like WebMD is two-fold; for many, it is a starting off point – people learn medical jargon and potential questions to ask their healthcare provider. They are given the language, the power to use their voice. For others, they’re searching for a name. The reason why. A diagnosis is an explanation for the symptoms. It’s an explanation of the body and, in turn, an explanation of the self.
Despite these articles urging me against it, I fixate on this idea of a diagnosis. The investigation and research behind a potential illness gives me a sense of control, a sense of power. I check my symptoms on the web. I want to name the beast and tame it.
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Almost a year ago, I had a conversation with my child’s doctor. I had been hesitant to schedule that specific appointment for several years. From being a loquacious toddler to a kindergartner with an inability to sit still during story-time, I argued with myself about how much of her behaviour was congruent with her age. I vehemently believed, and still do, that our country over-diagnoses and over-medicates children with attention disorders. By tagging an acronym to my daughter’s name – the thing that kept her from ever being silent, that refused to allow her a moment’s quiet – would I also be defining her character with a diagnosis?
Back in the room with her doctor, we discussed the possibility of an attention disorder, or the probability that my daughter was just “spunky”. We agreed to try other avenues first – a referral to a counsellor to discuss some important life changes and a meeting with her teacher to make sure she had more time to finish tasks. I changed aspects of my parenting style. I gave her less sugar. But that was a year ago and her behaviour continues to intensify.
I use the Internet to check the symptoms of ADHD: trouble focusing, inability remembering and following instructions, difficulty staying organised, impulsivity, easy distractibility, excessive talking, frequent loss and misplacement of homework, books and toys. The Internet is painting a portrait of my child.
I am disciplining her one day, voice tired and head aching, when I snap, “Will you stop twirling in circles?!” She tries to stand still while I continue to talk. Can’t. Slap slap slap, goes her hand on her thigh. Her name escapes my mouth slow and pained. “Stop,” I beg her.
“Mummy, I can’t. My brain and body want to do two different things.”
The definition of stigma is “ a feeling of disgrace.” With an impending diagnosis of ADHD, my daughter already feels a sense of separation between her brain and her body but seems unbothered by it.
When I initially told my daughter I was going in for a sleep study, she was fascinated.
“You mean,” she started, “you’re going to go sleep somewhere else and they’re going to watch your brain?”
The entire process amazed her. When I came back from the study, groggy and hair stuck with lubricant, she wanted to know everything. I explained the leads and monitors and showed her a picture of myself attached to machines.
“So, is something wrong with your brain?” she finally asked.
At the end of the study, the technician came into the room to tell me the test was successful, which just meant that they’d gathered enough information to tell me something. She began unhooking the leads and told me I would have results in ten days.
“Can you at least tell me if I have a diagnosis?” I emphasised the last word. I didn’t care what I had, I just wanted to know that something was there, lurking about in my brain and causing my fatigue. If the unidentifiable was identified, if there was something “wrong”, then I had the chance to make it right.
“You definitely have something,” the technician said, “and I think your diagnosis is going to be idiopathic hypersomnia.”
I peppered her with questions. Was there a medication for that diagnosis? How was idiopathic hypersomnia different from narcolepsy? I stored her answers away, fully prepared to go home, wash my hair and dive into the Internet’s labyrinth of science and medical journals.
Knowing doesn’t eradicate the fact that something is wrong with my brain. But, it changes how I perceive the way my brain functions, the way I respond to those who insinuate that I am tired because I am lazy or roll their eyes at the amount I sleep a night. It changes the way I perceive myself.
In 2016, the CDC reported that 9.4% of US children aged 2 to 17 – that’s 6.1 million children – were diagnosed with ADD/ADHD, a 2% increase from 2015. Of these children, almost 80% received some form of treatment. Over a decade ago, only 4 million children were diagnosed, and even less were being treated. If you look at graphs depicting the rise in ADD/ADHD diagnosis over the years, it isn’t clear if this correlates with population growth.
Are more children developing this mental health disorder?
Or are we simply more eager to diagnose and treat it?
My daughter and I often have conversations about mental health. I’ve told her the brain produces chemicals that help us have feelings and that, sometimes, the brain over- and under-produces. We call it, brain sick. Even now, as I prepare her for an appointment with her paediatrician in the next few weeks, I don’t want her to think that something is “wrong” with her. Except, there definitely is. Preliminary testing from her counsellor, school teacher and me shows that she exhibits all the symptoms of ADHD. I want her better, but I don’t want her to think that she’s weird. I want her healed without realising something was ever wrong.
Three out of four people with mental illness report that they have experienced stigmas. Websites like National Alliance on Mental Illness dedicate their pages to mental health awareness. Columnists write posts like, “You Can’t Pray Away a Mental Health Condition” and “Mental Health Conditions are Legitimate Health Conditions.”
In an essay titled “Nine Ways to Fight Mental Health Stigma”, I find a litany of tools to combat stigmas, like, show compassion for those with mental illness and be conscious of language. I fixate, though, on the last point. Don’t harbour self-stigma. The actual definition of a stigma is “disgrace associated with a specific circumstance; a feeling of disgrace.” With an impending diagnosis of ADHD, I know that my daughter might begin facing her own feelings of shame. But is stigma taught? When, as a sleepy child and then fatigued adult, I felt embarrassed, was it because of some sense I’d privately cultivated? Or because people helped me feel that way? My daughter already feels a sense of separation between her brain and her body but seems unbothered by it. Is it because she does not have the space in her mind to verbalise such ideas? If she’s placed on a medication that creates room in her brain, a place for her to slow down and fully articulate the words building in her throat, will she come to her own conclusions about who she is? Will she be ashamed?
Also on The Big Smoke
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- Epigenetics: Tracking the negative mental conditions we biologically pass down
So, I don’t have narcolepsy. Two weeks ago, I received the official call from the technician. The neurologist interpreted my report and confirmed the diagnosis of idiopathic hypersomnia, which is not narcolepsy.
After a week’s worth of investigation, here are three things I know:
- Treatments for idiopathic hypersomnia focus more on combating excessive daytime sleepiness rather than sleep duration and include taking prescription methamphetamines to prompt wakefulness;
- Unlike narcolepsy, where scheduled naps can leave a person feeling refreshed, people who suffer from idiopathic hypersomnia can take naps of up to three hours without feeling less sleepy. If anything, naps, which often feel physically irresistible, are non-restorative;
- Whereas narcolepsy has a clear known cause, the name idiopathic, in idiopathic hypersomnia, literally means of unknown origin. Current theories include the malfunction of the norepinephrine system (the fight or flight response) or an abnormal hypersensitivity to GABA (the major chemical reaction related to sedation that leads to increased somnolence).
The knowing doesn’t eradicate the simple fact that something is wrong with my brain. But, it changes how I perceive the way my brain functions. It changes the way I respond to those who insinuate that I am tired because I am lazy or roll their eyes at the amount I sleep a night. It changes the way I perceive myself.
Yesterday, she said she told one friend about her medication. He was sympathetic. They won’t all be like that, I wanted to tell her, but didn’t. I worry that she will be made to feel weird.
We are still in the middle of it, my daughter and I. She has successfully started a new medication and I am awaiting mine. Interestingly, we have both been placed on very similar, amphetamine class C drugs; medicines that require a driver’s license to pick up from the pharmacy counter. But where I struggle to stay awake, my daughter cannot slow down. We have opposite brains, opposite chemicals. Amphetamines will increase my norepinephrine and decrease the amount of fatigue. For my daughter, amphetamines will paradoxically quiet her brain.
The changes have been slight. A pause here, a breath there. She is a hurricane moving down a class.
The first morning she took her medication, I warned her not to tell her friends she was taking it.
“Why?” she asked.
I didn’t answer. I worry that she will be made to feel weird.
Yesterday, she said she told one friend about her medication. He said he was worried about her, she told me. He was sympathetic. They won’t all be like that, I wanted to tell her, but didn’t.
A few weeks before her appointment with the paediatrician, I enrolled my daughter in a karate class at our local gym. I’d previously read that karate is a great tool for children with attention and behavioral disorders. Classes teach structure and self-discipline, while reinforcing a positive body image.
I purposefully don’t sit in on her classes. I’ve found in the past that I attempt too much to control what I see as inappropriate behaviour. The summer she participated in cheerleading, I sat with the other peppy mums, gripping my seat while watching my daughter flounce about the room, oblivious to instruction. I can say now that my fatigue is a factor in how I responded to my daughter’s excessive energy, her exuberance for chatter. Every time she made eye contact with me, I snapped my fingers or flicked my hand, signals that indicated she should be paying attention and following the rules. Eventually she learned to stop making eye contact.
Now, I drop her off at the studio inside the gym while I work out, and then afterwards meet her by the door. She bows to her sensei as she exits, a blonde-haired woman with a kind face and beautiful blue eyes. My daughter asks many questions. Her sensei squats before my daughter and stares, thoughtfully, into her face. She allows my chatty child to talk for as long as necessary and answers in turn.
Two days ago, after class, my daughter recited the things she had learned, all that had happened. She told me she was sparring with another white-belt when he had thrown her harder than he was supposed to. He hurt her, and she cried.
“And then I used my weapon,” she said, proud.
“What weapon?” I asked, confused. She was only a white-belt. Her almost 9-year-old body was dwarfed by a gi that should have fit a 6-year-old.
Her first and most powerful weapon, the piece of her I’d tried most to quiet, to change.
My voice, she’d said with pride. My voice.