As part of the annual narcolepsy conference in the US, N-Art holds an exhibition of works by narcoleptic artists. Last year I submitted a portrait of narcoleptic hero Julie Flygare, but this year I wanted to explore a subject much more personal to me: narcolepsy and mental health.
In this post I’m going to talk a bit about my own journey with depression and anxiety, so things are going to get a bit heavy (and very long). I have some reservations about sharing this, but I feel like these issues have to be discussed, as mental health is such a big issue in the narcoleptic community and people need to know that they are not alone in their experiences.
The idea for the artwork I have submitted this year was actually inspired by an article I read recently. It described in detail the authors silent struggle with serious depression and suicidal thoughts; managing to scrape by without the will to live for years, without anyone around her ever suspecting that such serious thoughts were constantly on her mind. Reading this brought back so many memories that I hadn’t really thought about in years, and I wanted to get some of my feelings about this out through my artwork.
The lower half of this piece depicts the time I spent as a teenager with undiagnosed narcolepsy, also suffering in silence. Every day I would drag myself out of bed with the same resignation, in a constant haze of half sleep. Every day I wondered why I couldn’t stay awake no matter how much I wanted to or how hard I tried. I would often come home from school and straight go to bed, knowing that trying to do my homework (or even something I enjoyed) would be useless as I would be asleep within a few minutes. When I got to my final years of high school, I was so overwhelmed by the pointlessness of it all that I occasionally took days off school just to sit at home and cry until I couldn’t breathe.
Despite the intensity of my misery, nobody once raised any suspicions about my true state of mind. I had friends and a boyfriend, somehow managed to keep up my good marks in school, and never caused problems with my family. I seemed like your typical introverted teenager — yet inside I was barely coping. I often wished for a way to simply disappear from the earth and be forgotten, but was always acutely aware of the effect that acting on this impulse would have on my family. I resigned myself to the idea of continuing a life devoid of hope, simply to prevent my personal failings from ruining their lives as well.
My emotions, at once both completely numbing and sharply painful, combined with the symptoms of my narcolepsy (e.g. cataplexy, hallucinations) left me with the impression that I had no longer had control over my mind or body. I spent my time at home sleeping, not just because I was tired, but so that I could remain unconscious and unthinking while the hours floated by. As I became more and more anxious, I avoided social situations, and became overly dependent on my boyfriend at the time (a pretty toxic relationship that did much more harm than good). With no outlet for my emotions, I started self-harming just to feel something, just to have some release. I was so paranoid about calling attention to myself that I limited my area of attack to my upper thighs so that no one would ever see — and it worked.
Almost every day I wished that someone would look at me and see the reality behind the mask. I fantasised often about being whisked away to the school counsellors office and told that there was something seriously wrong with me. They would call my parents, my act would be exposed, and finally someone would be forced to take the situation out of my hands. But unfortunately that day never came, and it seemed as if life would go on like this forever.
Luckily, the physical symptoms of my narcolepsy eventually became impossible to ignore. When I fell asleep during my trial HSC exams (final year of high school) I told my mum, went to the doctor, and a few months later I was diagnosed with an open and shut case of narcolepsy with cataplexy.
After this revelation, and the start of my medication, my mental state slowly started to heal. And I mean slowly. The idea that my perceived “laziness” was not actually my fault made a huge difference to how I thought of myself, as did the ability to cut through the haze and stay awake for decent periods of time thanks to my stimulants. However, it was not until my 20th birthday that I made a conscious decision that I couldn’t live life this way anymore, and started earnestly working toward the change that I wanted. As I’m sure you will understand, re-learning almost all of your thought patterns is not an easy thing to do, but a thousand baby-steps later I have taught myself to be a (mostly) functional human being.
You can read about a few of my mental strategies in the “change your thinking” series of posts.
This new chapter of my life is reflected in the upper portion of my artwork. The continuous nightmare that was my life with uncontrolled narcolepsy has now transformed into something that no longer intimidates or scares me. Through truly understanding my condition, I have learned how to tame it. I now feel freed from the weights that used to pull on me so heavily.
My life now is by no means perfect; I don’t claim to know all the secrets to life and I still have a lot of things I’d like to improve on. But despite often feeling like things are upside down, I am so grateful for all the opportunities I have been afforded and look to the future with hope. I work freelance with confidence in my abilities, I don’t freak out before meeting with friends, I run (badly), I go to the hairdressers without anxiety, and dance like an idiot. I spent the first half of this year living alone on the other side of the world, where I even managed to make a group of really great friends. I know that my teenage self would never have imagined that these things were possible for me.
The difficult part is, I can’t say that I would be the person I am today without enduring these hardships. It’s going to sound clichéd, but I feel like the experiences of my past have allowed me to emerge as a person with a greater emotional maturity and sense of self-awareness. I am mindful of my own strengths and weaknesses, and am actively focused on making positive changes. Our brains are amazingly malleable if we allow ourselves to work on them.
The turns my life has taken have put me on the path towards creating this very website. My experiences have made me so passionate about raising awareness of our condition, letting people know about the impacts of narcolepsy on mental health and strengthening the narcoleptic community. Promoting these goals now provides me with a great sense of satisfaction, and ultimately a greater purpose in life.
People with narcolepsy are at a much higher risk of mental health issues and suicide than the average person. Unfortunately this link continues to be a strong one (and always will be due to the changes in our brain chemistry) but I think we can help people to have a better quality of life through raising awareness of this increased risk factor within our community, and through encouraging PWN to see depression and anxiety as a problem that is just as “real” as their narcolepsy. I still sometimes have a hard time taking my mental issues as seriously as my more physical symptoms, but at the same time I know that the improvements I have experienced in my narcolepsy symptoms have been directly linked to the improvements I have made in my mental health. I want to let others to know that things can get better, and a diagnosis of narcolepsy does not doom us to a life of living alone in the dark.
I also wanted to mention that my lifelong connection to art has always been of great benefit to my mental health. Spending time creating things (whether it be through painting, sewing, baking, collage, jewellery making or even just doodling) will always be a worthwhile activity for me, as it makes me feel as if I am actually producing something instead of just sleeping the days away. Even if you aren’t an “arty” type, try jumping on the adult-colouring bandwagon for an easy way to incorporate some creativity into your life. Art may seem like a frivolous use of time, but we must all make time for the things that make us happy in life.
I am a big supporter of N-Art and the use of art as a mode of expression and a healing tool in the narcoleptic community. Big thanks to Laura who organises the N-Art exhibition at the conference each year (hoping to get there and see it in person one day!)
To end this post, I’d like to address a few words to other people with narcolepsy who are struggling with their mental health. Please reach out to someone. You don’t have to tell them everything and it doesn’t have to be all at once, but the sooner you seek help the sooner things can start improving. Even if you don’t feel you have anyone to turn to, you can always speak to your doctor.
Alternatively, most places have hotlines set up to aid people in situations of high risk. Here are some numbers you can call in Australia, if you know of any in your part of the world please post them in the comments below.
Lifeline: 13 11 14 and crisis support chat
Suicide Call Back Service: 1300 659 467 and online counselling
Men’s Line: 1300 78 99 78 and online counselling
Veterans Line: 1800 011 046
Qlife: 1800 184 527
Kids Helpline: 1800 55 1800