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.
My artwork, entitled “Diary of a teenage narcoleptic”
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.
Leslie Knope, my role model in positivity and dancing
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
Congratulations on managing your successful life journey! As a mum of a mid 20s daughter with N w C, I am very familiar with the tale you tell, and understand the effort involved in maintaining a ” normal life”. Your encouragement of others to share their experience is so important. Best wishes and good luck.
Hi Lexi, thanks so much, I’m really glad other people can relate to my story. I know I can’t be the only one! I’m not sure if my life is exactly normal, but I do know that I am always finding new ways to improve things one tiny step at a time, and that is enough for me 🙂
fantastic post, elle! i relate to so much of it. i struggled so so long with wondering why i could not do all the things my peers did seemingly with ease. i thought i was weak… that my will power was not strong enough. everything was like trudging through waist deep mud. what in the world was wrong with me? fear was my only motivator. fear of complete failure. fear of getting into trouble. then finally, i was prescribed prozac for depression and things began to lighten up. i saw the world with more hope + possibility. i understood that life really didn’t have to be that hard. i found a renewed sense of being + actually saw beauty in the world. the grey filter of my world faded away. i have been on + off medication for major depressive disorder since that time (mostly on) + will most likely be on such meds for the rest of my life. i must warn you to never ever go off antidepressant meds without talking to your doctor. the depths you can fall into are deeper than you ever imagined. just because you start to feel better does not mean you are done with meds.
clinical depression was recognized in me a few years before the diagnosis of narcolepsy (without cataplexy). all of this was not recognized by doctors until i was out of college (ages 23-25) despite years of seeking answers + damage being done. even once i was on antidepressants + was feeling more hopeful about life, i could not hold a job for any good length of time. once i learned a new job, it became boring + boring lead to sleepiness and desperately trying to stay awake at work. my hopefulness began to fade. now what was wrong with me? maybe i was as weak as i once thought. maybe my meds were no longer working. what now? plain old dumb luck, if you can call it luck, led me to a diagnosis of narcolepsy in 1995 (a month before i turned 26). it was a confusing time… a relief that what was wrong had a name + that treatments were available but a difficult time of knowing just what i was + was not capable of doing + being in life.
life with a chronic illness such as narcolepsy or clinical depression is not an easy life but it is a life that can be lived well. it can be a deeper + more meaningful life where your compassion for others is strong + very real. you can learn to really enjoy the smaller moments of life + be grateful for what is, as it is. i wish this for you as you share your story with others and as others share their story with you. we are all one big human family + everyone has a struggle, each very real to them, that can be made a little easier through your kindness as you move through your day. i am grateful to have learned so much through my illnesses. it could always be worse + for now i am happy that it is not. i am stronger than i ever imagined + will continue to learn and grow as time moves on. may you as well. <3
Hey Laura,
Thank you so much for your considered response and for sharing your own experience. You are so right about having a deeper sense of compassion and being more grateful for what you are given, these are two of the most important things I have learned and I am happy that going through all that struggle has had some positive outcomes. Oh and I know I already put it in the post but thanks again for your work with N[ART], such a great initiative and can be so beneficial to our minds. Glad to hear you are doing well also 🙂
So relatable and accurate. Thank you for sharing. I am a 14 year old with narcolepsy and cataplexy, but I am currently undergoing tests (I have to get a spinal tap at the Mayo Clinic soon) because I have a severe and rare case of it. It seems as if each day it progressively worsens. I diagnosed myself after a few months of feeling tired 6th grade, then my doctor agreed and officially diagnosed me. To say both have impacted me dramatically is an understatement. Especially since I used to be a lively, motivated person and student. Up until the winter of 6th grade, I was the kid that was popular, well-liked by EVERYBODY (teacher, friends, friends’ parents, etc.) and who people wished they were. I was an overachiever in not only academics, but excelled in sports and extracurriculars. I can vividly remember my third grade teacher telling me, jokingly, “I want to be you when I grow up.” I was basically the face of success. And it all came naturally to me. I never knew what it was like to have people who didn’t like me, how it felt to do bad on a test, or what it was like to fall behind my classmates. I never even DREAMED of anything like that, because I thought I knew that it would never happen to me. Oh dear, how foolish I had been. Nothing prepared me for what happened three years later. It was unheard of that Tatiana was getting a B in a class. It was too hard to believe. I was the kid that would become valedictorian of my graduating class, sent off to any college I desired, and fulfilled my lifelong dreams of success. Tatiana, the beautiful French girl with the long, long, wavy brown hair that went down to my bottom, Tatiana, the only kid who worked ahead in advanced math class, Tatiana, the girl you wished you were; who you wanted to be. Practically overnight, I was robbed. Robbed of my success, friends, and everything else that made me ME. I hate to talk of myself with such a high ego, but the thing is, it was all true. WAS. Two years later, I’m on the verge of failing all of my classes at my private, college-prep academy, and transferring to a school for kids with learning disabilities. Even with all the new accomodations and slackened work amount. I am technically supposed to be in the lowest math group, as I have an F in the regular math class I was downgraded to. Don’t get me started on the rest of my classes. What happened to the old Tatiana? She’s dead. In her place is a severely misunderstood, depressed, TIRED zombie. I’m literally powered by medication as a car uses gas. Stimulants are the new Tatiana. Stimulants control my personality, attitude, and behavior, as well as their side-effects. I don’t even know who I am anymore, except for narcoleptic. I really don’t want to go into more detail, but here is a part of my story.
Hi Tatiana,
I’m so sorry you have to deal with all this, sounds like you have been going through a lot. I had a similar experience as an over-achiever in my younger years, but I guess I was lucky in that my symptoms only started to become noticeable a few years later on. However I think the benefits of an early diagnosis are that you will not have to wrestle for years with the question of what is wrong with you, and you will have more time to adapt to the different limitations you now live with.
Being a teenager is generally a hard time for everyone, and this is made much harder by your condition (as I’m sure you know!) Forming your identity as you become an adult, together with coming to terms with the diagnosis of a life-long condition, is a big deal — as is learning the new thinking patterns that come along with that. You are basically in mourning over the life you thought you would have, and that is totally 100% normal. Most narcoleptics I have spoken to have gone through the same thing at some point.
I don’t know if you have read any of my other blog posts, but I have a few in a series I call Change your thinking that might help you with some ideas of how to start moving on from this low point (based on strategies that I used myself). I also suggest that you try seeing a counselor or psychologist, as they can further help with this whole process and make sure that you are going okay mentally. It’s not for everyone, but I don’t think there is any harm in giving it a go if possible. Even if you have a very supportive family (which I hope you do!) there are always things we don’t really want to discuss openly with them, but can still benefit from being given the freedom to talk about.
Tatiana, I have to say from you message that you still seem very bright and capable, and I’m sure that part of you is still in there somewhere under the tired “zombie” layer. I think perhaps you just need to find new ways of channeling that energy. Don’t give up on yourself, and remember that there are lots of different ways to be successful and happy in life. You are only fourteen, so you still have lots of time to figure these things out!
From my point of view, having narcolepsy was an extremely tough experience to go through as a teenager, but please keep in mind that things will get better. I hope that one day you will be able to look back on all of this and say “it was really hard, but it made me the person that I am today — a person that I’m actually really proud of.” Try to take things one step at a time. I can’t promise an easy road ahead, but it does get much easier with practice 🙂
Sorry this was such a long and ramble-y response but it feels a bit like writing to myself as a teenager, so I just want to help in any way I can!! If you have any questions or just want to talk feel free to email me: eleanor.wales@gmail.com 🙂
I don’t know if Tatiana will ever get to read this but anyway!
I’d like to say that I relate to what you wrote and if you ever need to talk to somebody I’m also French, and I’m 16 and have been dealing with Narcolepsy with Cataplexy since I’m 9 years old
I used to be like you, and became to change years by years… From the little girl who loved to be in the spotlight (I used to be in a drama group and in a chorale where the performances were dancing while singing) but since I was always exhausted, I started to go less to these activities and ended up leaving the chorale because I didn’t enjoy anymore, then I left the drama group, I still remember how much I was participating when I wasn’t Narcoleptic and how big was the differences between my first and my last year… From loving being on stage, I ended up having two replicas and enjoying backstage…
Nowadays I’m homeschooled as school’s horaries were impossible to keep up for me …
anyway if you ever feel like getting in touch with another (French) teenage narcoleptic I’m here 😀
Hi!
My name is Elisabeth and I will soon be 17. I was diagnosed with narcolepsy last year and have been really struggling with crazy symptoms. Not to mention the sadness and frustration at not being able to enjoy normal teenage action. Yet it I powers me that you shared your story and it gives me hope that there is a bright future ahead!
Hi Elisabeth!
Thanks so much for your comment, this is exactly the reason that I wanted to share my story.
Narcolepsy can be such an emotional rollercoaster, especially as a teenager, but things will get easier with time as you get to know the patterns of your condition and how to best work around it 🙂
All the best!
x Elle
Great article! I’ve never been able to talk to anyone about my “suicidal” thoughts (including my counselor) for fear of being locked up in a mental hospitsl,I thought I was completely nuts and they would figure it out and never release me. But you described the feeling so completely. I didn’t want to die I just wanted to fade away. I also was very aware of how it would change my husband and daughters life forever. Suicide was not an option so I too resigned myself to a life of seclusion and fear. I still use sleep as a defense when I’m really sad….if you can just sleep through it you won’t have to have those horrible thoughts. I struggle daily with friendships…I know it is good for me to see and talk to them but they don’t understand why I am so different now. I also lost my job of 15 years. I wasked the registrar at a local elementary school. I loved the job! My coworkers were some of my best friends. Then I became ill and unable to perform the duties. I struggled for 5 years before being diagnosed. Not only did the school district not rehire me last year but the same people I thought were good friends started talking about me and I was told that people thought I was abusing drugs. I have never shared this particular detail with my family…I try to not care. But I’m sure others PWNs have struggled with this same issue.
I didn’t mean to ramble on but wanted to say thanks for sharing about your anxiety and depression.. I got goosebumps when I read it.
Thanks for all your work in narcolepsy awareness. You have made a great impact on me ☺
Hi Cheryl thanks so much for your comment, I’m sorry to hear about your struggles and I really hope you are continuing to pull through it okay. It always makes me so happy to know that my writing is helping other people in some way, and also to be reaffirmed in the fact that it’s not just me going through these things! Just remember that we are a lot stronger than we usually give ourselves credit for 🙂
Hello,
with all your optimism, I will probably not send this as it would be considered negative input. Can you imagine with partially understood narcolepsy I went off to Europe to study with a letter from my neurologist in California to a colleague in Vienna, Austria. The first eleven yrs. remain a nightmare sprinkled with travel and learning new things and a new language. I learned I was the only diagnosed person with narcolepsy and doctors found it all very interesting, so much so I was invited to ‘be studied’ in the big general hospital which resembled, at the time, something from an ancient movie called ‘snakepit’. scared me to death, kept a diary of all the strange mental illnesses of the people around me finally i got the flu and as I was told I could go home as in my state any medical tests were’ ruined.
Someday I should write about some of the people I encountered there and mind you everything was in German. one good thing is that in Austria we have socialized medicine and eventually I realized I was being treated by the best the country had to offer but suddenly the government forbid the selling of Ritalin which was my basic medicine at the time. also, very foolish I married a fellow who had not a clue to what was going on with me which actually and made me feel quite guilty. My life progressed and most people would think I was terribly lucky and I was .yet, on the other hand, I was living with a fear so great that sleep would catch up with me. I worked for various international organizations, travelled eventually all over the planet including twice around the world on a cargo-carrying ship that took a few passengers. (best thing I ever did). Since then I spend four months in South Africa doing my pictures for originally I was a fine art s major in college and although I completely lost any ability to really draw to my surprise I found I was very creative and my pictures were as much a surprise to me as anyone viewing them. so the years passed and that is why I am sharing this as I am by far the oldest contributor you have ever had on this website.
I will be eighty yrs. old next April. I have two grown daughters and this is the sad part for although we are used to having happy endings to stories, with narcolepsy you really come to realize none of the people you have known and associated with ever understood narcolepsy and therefore you, including immediate family, my daughters. they are very proud of my paintings and past activities but actually, I have always been an embarrassment, different, and I was never fully included in their lives. so, in the end, so to speak, i have to find enough remaining energy to even want to get up each day and I realize it is not because of the fault of others etc. but because of the draining of strength brought on by narcolepsy plus diabetes which was caused by the disrupted sleep at night that is typical of narcolepsy. so, I have survived and that is how I feel, and now i paint, read, check my emails, and try to keep depression under control, which means not wanting to have any stress, and keep my always strangled emotions from betraying me. I am truly worried, how it will all end, but for sure it will be alone. we come into the world from somewhere alone and leave the world for somewhere alone.
Sorry and perhaps there is no positive reason for you to read this considering most of you are learning to cope and I managed somehow, far away from my home or culture, another language My children were also, foreign, in that they have grown up in the culture of the country where they were born. what gets me is that my reason, mind, intelligence knows I have much to be thankful for but the physical mess of brain chemistry caused by narcolepsy seems to have power of its own in causing this increasing isolation and lack of energy to do things I have always considered were part of my basic personality like concerts as a good example. The people around an older person like me have little interest or patience which I accept, have to, what worries me is me and that is the depression that goes with narcolepsy so often and there is no medicine other than my own will power that will help, I know according to my neurologist. I have come to the point where I am sure I am so different that although admired at a distance by many no one is willing to get any closer and communicate and I consider that it is my fault, there must be something really off-putting about me in particular, that I have made my perception of the world around me and have learned nothing, or too much.
So, enjoy life, don’t feel guilty about things as it is a waste of time and energy of which you have but a limited amount . . your memories will be great company many times so try to have good ones, stay curious is extremely important and use your brain to be informed as best you can of important issues ….a great thing is having a pet or pets although due to our emotions when they pass away to cause us so much sorrow, tears are often just too near the surface and remain that way for that is how we were born.