Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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My Story with Non-24

by Cat Mocha
November 24, 2014 at 9:06pm

Today is Non-24 Awareness day, and as uncomfortable this makes me feel talking about my life and the horribleness of this disorder, I believe it's a completely necessary step for me to take. There's a huge stigma with sleep in our society, and it needs to change.

So I'm going to take some time here to reflect on my experiences with Non-24 and how Non-24 impacts my life. I'm going to talk about my personal history and the steps that lead to my diagnosis.

My Story

Warning: this will be long.

Since I was a little kid, I always had trouble going to sleep at night. I would stay awake all night bored out of my mind. I would read whole Nancy Drew novels under the covers with my flashlight while waiting for sleep to hit me. This didn't stop me from getting woken up at 7am every day so I could make it to school. For most of my schooling years I survived on 4 hours of sleep a night.

By the time I was in high school, my body was starting to feel the effects of chronic sleep deprivation. I got nausea constantly, my joints ached, my hands shook. I could no longer wake myself up, despite setting multiple alarms, or having ice water thrown on my head. I couldn't go to sleep before 4am every night, no matter how sleep deprived I was.

Eventually it got to the point where it became a problem and I began missing large chunks of school. I went to see a doctor and was diagnosed with a circadian rhythm disorder called Delayed Sleep Phase Disorder. What this disorder meant for me was that my natural sleep cycle was later than the average person. The perfect sleep times for me were from 4am - 12 pm. It wasn't insomnia, because I had no trouble falling asleep at those appointed times.

I thought, cool. Now that there is a diagnosis, I can move on with my life. Not exactly. Even though my doctor diagnosed me with DSPD, he wasn't very knowledgeable about it. He sent me to a sleep doctor that specialized in sleep apnea, a wildy different disorder. He decided Ambien and a host of other anti-psychotics would help me sleep; since that is what is used for people with insomnia.

Ambien is a hypnotic that tricks your body to go to sleep, even if it is not ready to. Instead of helping me sleep, it gave me hallucinations and some other lovely side effects. He told me that I would need to be on Ambien for the rest of my life if I wanted a normal life. I found out years later, that Ambien should never be used for people with DSPD, and it should be never used longer than 2 weeks at a time.

My doctor was misinformed. But that wasn't close to the worst thing he was misinformed about. When all of his treatments failed, he proposed a therapy called chronotherapy. He told me it was proven successful for entraining people with DSPD to a normal schedule.

Chronotherapy is the process of moving your sleep forward every day and stopping when you reach a desired time. For example, if I were to sleep at 4am. I would move my sleep to 5am. Then the next day, 6am. Then the next, 7am. Move that around all the way until you are sleeping at 8pm at night. Then stop.

I decided to follow his treatment plan. I found I could move my sleep forward 1 hour every day, but never backwards. I didn't care. It was amazing being able to fall asleep at 8pm again. I couldn't remember the last time when I was able to see the sunrise, so it was worth it to me. It seemed amazing except for one thing, I would always move back to 4am within a week after chronotherapy.

I had responsibilities like school to attend to, so I needed to use chronotherapy to get me on time because I couldn't afford to miss out on tests. My college wasn't very helpful with accommodating me at all. I talked to Disability Services and they told me there was nothing they could do to help me.

I thought, ok, that's fine, I don't need them; I'll just use chronotherapy again to move back to 8pm so I can make it to classes and chapel. But my sleep got more difficult to control with chronotherapy. I would push myself forward hours and flip/flop/skip across days just to get to class. At one point in college, I had pulled all nighters every week in order to make it to class. It was horrible, but I needed to graduate while I still had energy left. In the span of a few years, I had used chronotherapy over and over again; for weeks at a time.

Eventually it got to the point where I could no longer stop myself from moving forward. And that's when I found out I had developed something much more disruptive and debilitating than DSPD. I now have Non-24 Sleep Wake Disorder.

To sum up what Non-24 Sleep Wake Syndrome is about: I no longer live in a 24 hour day. I live in a 27 hour day. That means I move forward 1-5 hours a day, every single day. I can't predict how much forward I will move, and I can't stop it. There isn't a cure. There are treatments, but their success rate is low and has proven unsuccessful for me.

Non-24 is much rarer than DSPD. Only a few hundred cases of sighted Non-24 in the entire world. There is little support or understanding for people with Non-24.

As you can imagine, not having a consistent schedule means that I can not work a normal job, or any job. No one wants to employ me in the United States. The ADA doesn't help me, because they do not consider my disability to be worth accommodating.

What's sad about all of this is that it was completely avoidable. My doctor never warned me about the dangers of chronotherapy. In the scientific literature it is noted that people with DSPD can get Non-24 from chronotherapy, and it shouldn't be used more than a few times if it doesn't help the person entrain their sleep. Chronotherapy was considered risky. Now I have Non-24, and there is nothing that can undo it.

Emotional Impact

I guess I'll try to touch on the emotional aspect of this in the next few paragraphs.

I think coming to terms with me having this disorder for life was the hardest thing to do. To realize that I couldn't accomplish my career goals, and I could never experience the same things normal teenager/young adults get to; was pretty hard. I didn't recognize that this disorder would halt my career goals until after I graduated college. I was forced to say goodbye to my college degree, that I literally sacrificed my health for. It is now a worthless piece of paper.

I try not to think about being condemned to a life of poverty. My finances will always scare me, no matter how well off I am at any moment. I may be able to provide for myself now, but will I be ok in the future? I save everything I make, but I know even that isn't even enough to cover a lifetime. Most people will be able to take a year or two to find employment, but employment for me may never be possible again. I know there might be a time in my life where I never work again, and that's just too scary of an idea to wrestle with.

Secondly, my relationships have suffered greatly because of Non-24. I can't just see people often anymore. I can't predict when I'll be awake. When your sleep is constantly rotating you just can't see people sometimes, or even most times. You find yourself debating whether or not to stay up 30 hours straight so you can push your sleep forward enough, so you can be awake for a social activity the next week. Or you find yourself wondering if you should just sleep 3 hours for the day so you can see someone who hasn't seen you in a year. Social activities are really difficult.

And I think lastly, it's been hard to deal with the judgment. Sleep has a huge stigma in society. More sleep = lazy deadbeat. Less sleep = productive member of society. Guess where I stand.

When I brought up my sleep disorder in the past, I would get instant judgment. "Oh, why don't you just sleep earlier like me?". Or, "well most people have to adjust their sleep to get up for work, why can't you". Or they like to provide really unhelpful tips like, "Drink tea before bed!". Or "Exercise 3 hours every day!". Or the simple and subtle, "Go to bed earlier."

As much as I want to strangle these people, I have to understand they are coming from a place of ignorance. And some of them truly believe they are being helpful. I think the source of this problem is how society treats invisible illnesses. Illnesses like mental disorders, sleep disorders, chronic fatigue, etc, anything you can't see; gets treated like it is not real. If my leg was cut off, no one would question that I was missing a leg. No one would tell me, "Maybe if you try hard enough your leg will grow back!". Or, "man, you must be lazy for not being able to run as fast as me!" But for some reason, because I have a circadian rhythm disorder, it must be a personality flaw.

Anyways, I'm going to cut this off right here. I really hope me opening up about this will at least help break the stigma about sleep disorders and other invisible illnesses. Unfortunately, my story is very similar to others who deal with invisible illnesses. From the doctors not understanding, to school not understanding, to society in general not understanding. This story is a very common one.

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