Fighting the Desire to Sleep Forever
Editor's note: This article discusses depression and suicidal thoughts. If you or a loved one are experiencing suicidal thoughts, there are resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.
Suicide. It’s a hard topic to broach, but it has been a part of my life for a long time and I believe in the importance of breaking the stigma - especially when people with narcolepsy are at greater risk.
Personally, I remember having my first thoughts around the age of 13 that I didn’t know how to continue existing in this world anymore. This was around the same time that the first of my narcolepsy symptoms started rearing their heads, unfortunately, more enthusiastic about getting up and active than I ever was. I don’t think this was a coincidence.
I was struggling just to get by
By the time I found myself in the sleep specialist's office to be diagnosed at age 17, only weeks after my final school exams, I had been dreaming of finding an escape from life for years. In art, literature, and poetry, much has been made of the similarities between sleep and death. To me, my unexplained sleepiness definitely began to feel like a death sentence.
Living with the constant numbing exhaustion, the wild mood swings, the unexplainable behaviour, the complete lack of ability to follow through on anything I cared about... it was more weight than I could handle and it only seemed to get worse. The cherry on top was the expectations and judgement from others, when I was struggling so hard just to get by. I wanted it to end.
Hard to see my sleepiness for what it really was
Ironically, I had been paranoid for years that I had taught my body to be overly sleepy because I used to sleep as a coping mechanism for my all-consuming depression. I would come home from school and go straight to bed and sleep until dinner, desperate for any period of time where I didn’t have to be conscious of my thoughts.
I theorized that my body just expected that sleep was its natural state, which made it harder for me to see my sleepiness for the real problem it was. My endless need to nap became just another issue to blame myself for.
An unexpected question from my doctor
Once I finally found myself sitting in the specialist's office, receiving the inevitable diagnosis of narcolepsy, my doctor asked an important question. It was actually delivered in a slightly off the cuff way - as if it were a bit of an afterthought. “How do you find your mental health, do you feel depressed at all?”
I wasn’t expecting this. I made a non-committal noise before looking over to my mum, who had joined me for support in the appointment. I had spent basically my entire teenage life trying as hard as I could to hide the horrible things I felt inside away from her. Away from anyone, in fact.
There was no way I could drop that facade in the moment. “No, not really,” I answered, immediately hating myself for letting this one chance to be seen slip by.
The truth I knew deep down inside me
In truth, I’d been waiting years for someone to see and acknowledge the terrifying feelings I was having on a regular basis. I knew deep down that something was very wrong, but I was perilously shy, introverted, and anxious. I couldn’t even make myself an appointment to see a hairdresser, let alone a psychologist.
Worst of all, I was always aware of how extremely lucky I was to be a smart, young, white woman from a stable family and felt I had absolutely no right to be depressed. I was simply being a drama queen, a complainer, and any professional I let know about my feelings would likely laugh in my face.
Crawling out of the darkness
My suicidal thoughts went on for years beyond that appointment, well into my 20s. However, after my diagnosis of narcolepsy and beginning my treatment, I was able to make very slow, steady progress over the years. I gradually crawled out of that dark place myself, and later got help from a psychologist who helped set my good habits and coping strategies in concrete.
Grateful for my family's support
I feel incredibly lucky and somewhat guilty when I think about my experience with suicidal ideation; because I know what allowed me to get through it. I always had the support of my family, emotionally and financially.
Even though it took them some time to truly appreciate the extent to which narcolepsy affects my life, they always had my back and would ensure that I had a place to live, food to eat and at least an attempt at understanding my circumstances. I’ve never had to worry about ending up homeless, or living with people who constantly berate me as being lazy or useless. I've come to see my family as people I can be open with about my state of mind, even when I'm struggling. I know this is not a luxury every person with narcolepsy has.
Coming full circle
For me, looking back on the days when suicide was frequently at the forefront of my mind, I feel comforted that I can no longer access that dark place. After many years, I’ve reached a state where, for now, I’m stable and happy in the weird little life I’ve carved out for myself. Most importantly, I'm now confident that I have the tools to weather whatever challenges life throws at me, without immediately seeking an escape.
Things have come oddly full circle, as I am now able to use my experience with suicidality in my work as a mental health peer worker. This work, along with my role within the narcolepsy community, gives me the type of meaningful existence I could never imagine back when everything felt pointless.
Ironically, it was those moments when I questioned it all that have now transformed me into a person who has everything to live for.
Do you feel that your doctor understands narcolepsy?