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LIVING WITH IDIOPATHIC HYPERSOMNIA
EMILY ROSEN

 

I have been tired my whole life, but it was only in 2014 that a psychiatrist recommended a sleep study after hearing me complain of tiredness for over a year. In addition, I was desperate to go off adderall, which at that point I had taken for 15 years after being (mis)diagnosed with ADHD. Whenever I attempted to taper the stimulant, I could not get out of bed for days and then would be debilitated with sleepiness.

 

Based on the sleep test, I was diagnosed with narcolepsy but felt the symptoms didn’t match my own. I happened to be reading the DSM-5 for my schoolwork a week or so later and stumbled upon Idiopathic Hypersomnia (IH). I knew that’s what I had immediately. Never had my struggles been so well articulated. Sleep inertia actually had a name! I switched neurologists and explained my situation. He ordered another sleep test. I told myself that if it was indeed IH, I would kill myself. Until that time I somehow believed my sleepiness could be cured if I found the right doctor or just pushed a little harder. I got diagnosed shortly thereafter, but my post doc in clinical psychology had just started and dying wasn’t an option at the time. 

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A few months after my diagnosis, my then husband left. He didn’t “have enough energy for both of us.” And he wondered what the chances were that I, out of all people in the world, would have this disorder. He thought it was in my head. It took me years to get over his years of emotional abuse surrounding my disability. It makes me cry to this day when I think about it. The pain of being devalued and gaslighted about how my experience was fabricated remains as raw as it was at the time. Maybe once I fully accept the reality of what my life with IH means this will get easier. But I am already 43, 9 years post-diagnosis, and time marches on whether I am awake or not.
 

During the process of being diagnosed with IH, I was working on my doctoral project for my degree in clinical psychology. I had been focusing on assessments related to organizational climate in childcare environments. As I read more about sleep disorders and their relationship to mental health, I felt compelled to change my topic. I ultimately conducted a study on psychologists’ knowledge and practice related to pediatric sleep disorders. It was my attempt to turn my own experience with IH into something that could be useful. I didn’t want others’ IH to be overlooked as depression as mine had been for twenty years.

Living with IH has got to be one of the loneliest existences ever. You basically have less time alive even though your life expectancy is the same. So, your entire existence is like showing up ill-prepared to class and only being able to marginally follow the conversation because you didn’t get to do all the reading. It is not as though you are alive in the way that you see other people living because you are constantly struggling to keep up with basic functioning. It’s an existence of unrelenting alienation from the rest of the world. Partners become frustrated. Friendships are hard to maintain. Work is a struggle. IH eliminated all possibility of the life I had anticipated. My career has been quartered and having kids is impossible. Thankfully my hound dog doesn’t mind sleeping in.
 

I wish I could be more positive about IH, but there doesn’t seem to be anything positive about it. That being said, receiving a diagnosis allowed me to stop pushing myself to the point of mental and physical collapse. Before I was diagnosed, I was so sleep deprived that I was massively depressed and lived with constant suicidal ideation. Receiving a diagnosis allowed me to reshape my life and increase my sleep amounts so that at least when I am awake my mind is not shattered. With 12 hour sleeps, naps when needed and acceptance of my need to take adderall, my brain began to recover. I was no longer sick all the time. My migraines essentially stopped. My skin healed because I no longer picked it compulsively.  A diagnosis also allowed me to find a community of people online who understand what it’s like to exist 3/4 time, and I am incredibly grateful for that. 
 

I haven’t yet found my peace with the implications of living with IH, and so this is not at all a happily ever after story. I am sad a lot of the time because I am still grieving the impossibility of my life having many experiences that most take for granted. But I no longer blame myself for failing to live up to my expectations. My diagnosis at least allowed me to reach peace with myself and to extend myself a bit of compassion.

August 2023

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