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Living with Delayed Sleep Phase Disorder/Syndrome

I’ve been wanting to make a post about this for a while, but have never been fully able to get across what I want to say. I’ve tried making a video, writing a status, or finding a video or post online that accurately sums up what I’m feeling, but I’m yet to find a perfect sum up. So this is my attempt at finally trying to say what I need to say. In recent years, I’ve been a lot more vocal about my mental health issues - particularly my struggles with anxiety and depression. Sadly, a lot of people suffer from these kinds of issues, but as a result, there’s a great deal of media on peoples’ experiences and there is constant, ongoing dialogue. This means that ultimately, there is less stigma attached to common mental health problems that there was, say, 10 years ago. It’s no secret that talking about health problems is an effective way of educating and informing, and thus ultimately reducing stigma. Naturally, I want to join the dialogue about Delayed Sleep Phase Disorder (DSPD) or Delayed Sleep Phase Syndrome (DSPS). However, looking online, there doesn’t actually seem to be much of a dialogue happening - and therefore, I want to create one. Sometimes I come across YouTube videos in which YouTubers eloquently put into words the exact thoughts and feelings I’ve had in my experiences of mental health, and share them across platforms like Facebook, able to say “THIS is what I feel like, they’ve said it so I don’t have to!”. With DSPD, I’ve tried to do the same thing, but there just doesn’t seem to be enough good quality media available on DSPD. I’ve tried to fill this rare internet void and make a video myself, but it was just awkward and horrible, so I’ve finally decided to talk about here: HERE WE FINALLY GO. Between college and uni, I took a gap year where I worked two jobs and spent a lot of time sleeping. During this time, I had certain weeks where I wasn’t needed at work and had quite a few days off in a row, and pretty much no reason to get up or out of bed. After a while, I realised that not needing to get up meant I was constantly staying up late and getting up late - I wasn’t trying to have a later sleeping cycle, but when left to my own devices, my natural sleeping cycle seemed to gradually drift later and later. When I had to go back to work, I struggled to get my sleeping pattern back to a healthy, “normal” cycle. At university, this only got worse. I only had to be in uni three times a week (on average) and on days I had uni, I would sleep very little, and on days off, I would sleep in very late. By the time I reached my third year, I would sleep for over 12 hours a night on days off, and for less than 3 hours on uni days. This would work out about average weekly. On a “normal” day, where I don’t have to get up the next day, I’ll go to bed around 12am-1am, and wake up around 12pm-1pm. At the time my DSPD was at its’ worst, I would go to bed around 5am-7am and get up around 3pm-5pm. In the winter, this was absolutely devastating and usually meant I would get no daylight, which didn’t help my mood. Delayed Sleep Phase Disorder is characterised by a delayed sleep phase - so where a healthy person with a normal sleeping pattern would wake up around 7am and go to bed around 10pm, an individual with DSPD would go to bed and wake up markedly later. I’ve never been formally diagnosed with DSPD (and according to anecdotes online, it’s difficult to be formally diagnosed), but last year I finally went to the doctor, described my symptoms, and received treatment. I’m normally very against self-diagnosis, but sometimes in order to receive treatment you need, you don’t have much of a choice. Melatonin works absolute wonders, but you’re not supposed to be on it long-term. I now use it once a week to help kick start a decent sleeping pattern for the week, though by Sunday, my sleeping pattern is almost always back to being terrible. My goal is to be able to fall asleep by midnight each night, and be awake by 9am each morning. Before getting on medication, or labelling what I had as DSPD, I assumed that I was just a normal teenager with a bad sleeping pattern. Once I realised that this bad sleeping behaviour continued out of my teens, I dubbed it a mixture between pure laziness and as lethargy, a symptom of depression. Part of the reason I’m making this post is because the vast majority of my friends and family who have observed my sleeping pattern are quick to label me as lazy. I have been given the same advice over and over again - “just go to bed earlier”, “set alarms”, “force yourself to get out of bed” - but people seem to fail to realise that this has the same effect as telling someone with depression to “cheer up”. I haven’t chosen to have a delayed sleep phase. I don’t get pleasure from staying up all night while every one else is asleep and getting up in the early afternoon. I don’t enjoy being called lazy. I’ve made attempts to gradually go to bed 15 minutes earlier each night and get up 15 minutes earlier each week - failure. I’ve attempted to stay up all night and go to bed early the next night in order to reset my schedule, in a similar way to jet lag - failure. DSPD isn’t cured by just going to bed earlier. Its’ origins don’t seem to be 100% understood either - some sources attribute it to biology, others stress. For me, I believe it’s a mixture - it’s my hormones, my personality, my biological makeup, a little bit of laziness, and a bit of lethargy. I’m coping with it a lot better now than I have been in the past, and now I want to start a discussion - a statistic I read somewhere said that 15% of people have DSPD - so why is nobody talking about it? If only 7% of the population have depression, why is it so openly discussed? Thank you for reading this and being part of this dialogue. For more information: https://sleep.org/articles/what-is-delayed-sleep-phase-disorder/

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