Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mark's Story With Non-24

I am a sufferer of the rare neurological condition Non-24-hour circadian rhythm disorder. There are several different circadian disorders (see www.circadiansleepdisorders.org/defs.php for some examples) but mine is "Non-24". I should point out that while this particular condition mostly affects blind people, I am sighted.

To anyone reading: if you know somebody who has odd or troublesome sleeping issues, please read the rest of the Circadian Sleep Disorders Network website even if you don't read what I've written below this line. You may help somebody you love or care about to avoid decades of misery.

Non-24 is hard to explain in a way that anyone who doesn't have a circadian disorder can understand. It means that my body-clock cannot sense (or react to — the condition is so little understood that medical professionals don't seem to know) the change between night and day, and as a result the length of a full day/night cycle for me (it's different for each sufferer) is not 24 hours but currently closer to 25½ hours (it fluctuates quite a lot though, sometimes it seems to be about 24¾ hours, sometimes it can be as long as 30 hours) — the effect of this is that each day, I wake and sleep about 1½ hours later than the day before. That's when it's being consistent. Sometimes it goes backwards. I never know when this is going to happen.

None of this is something I can override — I did try for many, many years and failed time-and-again, with the side effects of massive sleep deprivation leading to a compromised immune system and constant infections, migraines and concentration lapses amongst several other things.

When I sleep, it's generally for the normal 7 to 8 hours — it's just that I don't know WHICH 7 to 8 hours it will be.

It's apparently like having permanent Jet Lag.

There are also the times when something seems to go haywire, and I'll be unable to sleep for a full 24 to 72 hours, and those other times when I'll sleep solidly for over 24 hours. These occasions can be triggered by stress but often I have no idea why they happen. One such stressful situation is when I have an appointment that cannot — or will not — be rearranged, such as those involving the UK's benefit agency and the Department of Work and Pensions.

There is a huge stigma with the disease as everybody assumes you're just being lazy or aren't trying hard enough. They can sleep or wake when they need to, so they believe everybody can: It's natural — and therefore so can you. Just try harder. Have you tried warm milk? Have you tried Nytol? Try exercising. Try not exercising. Try bananas. Don't eat bananas! Give up caffeine. Give up sugar. and so on, and so on.

This horrible disease has ruined my life. I had no idea that I had it, nor did anybody else. I had solid A-grade exam results at the beginning of senior school, but over time the condition worsened. I was so often late at school that I was on detention every week for over 2 years.

At sixth-form, I barely passed my A-Levels at all. I couldn't face the thought of failing University so never submitted my application, leaving my plans to study astrophysics to one side.

At home, our family had constant arguments over my odd sleeping habits and my difficulty waking up at the required times. This went on long past my school years and into my working life. From age 18 until 31 I worked, but was sacked from almost every job I've had, always with the same reason — "Good worker but unacceptable lack of punctuality" — this includes when I was fired after a long stint working in the NHS. My direct manager and colleagues knew that I always made up any lost time and that I worked well, however the senior managers did not care — I was just a number on a screen and that number had too many late marks next to it. Very few ever considered it could be a medical problem. Those colleagues who weren't close to me just assumed I was out partying — I know this, because I heard them talk behind my back more than once.

My personal life has suffered enormously — how do you hold down a relationship when you're completely out of sync with your partner? They want to sleep, you're waking up; they want to go see a film, you're exhausted from being awake for 30 hours solid; You're feeling "in the mood" but it's 4am and they're fast asleep; they're feeling "in the mood" but it's 9pm and you've not even had your breakfast yet; they get annoyed when you're making noise in the house at night (even though you're doing your best to be quiet) — the list goes on and on. Mostly though, for me, are the feelings of guilt when you miss the events that are special in their lives. That's what's really ended my long-term relationships. There are only so many times you can oversleep for a birthday/Christmas/St. Valentine's Day. Meeting new people is also pretty much impossible. Non-24 also affects my friendships — it's very difficult to keep "in the loop" as it were when you're never able to socialise. Worse than that, I missed the funeral of a friend because I wasn't able to wake up at the right time. I think that was the first time a lot of my friends began to realise that this really wasn't something I could control, but the weeks following it while they worked this out were not particularly pleasant.

My condition has even put my life at risk — some time ago, there was an explosion in my street. All the houses were evacuated, and my neighbours taken to a safe distance, but I slept through the entire thing. I awoke many hours later to find the road littered with glass and other debris. When I spoke to the police officers present, they'd attempted to wake me by hammering on the door. My neighbours had called my phone. None of it had even registered with me as I was too deeply asleep. Luckily there were no secondary explosions or, very simply put, I would not be alive to write this now.

Sleep disorders can also be life-threatening in less direct ways: there is a growing body of evidence that disruption to circadian rhythms can lead to permanent memory damage, immune system dysfunction and even cancer. There are other aspects too - vitamin deficiencies from lack of sunlight being one. Even when Circadian Rhythm Disorders aren't threatening your life, they steal some of the quality of living away as they also affect bodily functions such as digestion due to the complex interactions between hormones. For me this has led to Irritable Bowel Syndrome. Who knows what else it might affect?

It took until I was 30 for my condition to be diagnosed, as the medical community in general simply isn't aware of it. Before my correct diagnosis, I was misdiagnosed with many things including insomnia and depression, for which I was 'treated' — to no avail and at great expense, both to me (and my family, and friends) physically and emotionally, and to the National Health Service (NHS) in the cost of treatments that could not work as they were not treating the actual problem. This is quite common with circadian disorders, as the they often lead to depression (for example) as a symptom, not a cause. The symptomatic depression can be treated but the cause is still present so it can very easily reassert itself. This can lead to years on a pharmaceutical merry-go-round, as each medication is tried in turn, each failing.

During one period on antidepressants, there were times I attempted to physically knock myself out, simply because I was so desperate to sleep at the same time as everybody else.

At one point, when I was 18, I was referred to a sleep apnoea clinic. In hindsight it wouldn't have done much for me, as sleep apnoea is a very different illness, albeit one that can also have fatal consequences, but it may have helped speed up my true diagnosis. As it was, the appointment was for 9am, and was a 2 hour bus ride away. I begged them to make a later appointment but, well, to borrow a phrase from Carol the miserable, 'more than my job's worth'-type receptionist in Little Britain, "computer says no". I overslept of course. When I called them I was told that because I'd missed the appointment, I would not be getting another and that another referral would be declined.

My diagnosis eventually came about through pure fluke — two things happened when I was about 28:

1) My GP retired and I changed surgeries to one closer to home. My new GP was much younger than the previous one, and he was much more of the opinion that throwing antidepressants at my sleeping problems was not the correct solution. Neither of us knew what the correct solution was, but we both agreed that antidepressants and insomnia medication were not working.
2) A friend came across a study of circadian disorders in a journal and recognised that the symptoms sounded familiar. She passed the info to me and I found some information on Wikipedia which matched my experiences almost exactly. I'm not ashamed to admit that I cried when I read it — it was the first time in my life, ever, that I realised I was not the only person in the entire world who's waking and sleeping didn't seem to work like everybody else's.

I took a print out to my GP who agreed that it did look very similar, and from then it took another 18 months before I was referred to a circadian rhythm specialist neurologist. Incidentally, during that 18 months I had a preliminary diagnosis, which the senior manager in charge of my employment termination at the NHS refused to take into account during my dismissal for unpunctuality. At my sleep specialist neurology referral appointment, 18 months after the chance finding of the information, I was officially diagnosed.

As mentioned in the previous paragraph, I was fired from my job, however I was soon hired again and worked in that post until I finally had to admit defeat just over a year ago, as the health problems associated with chronic sleep deprivation became too much for my body to handle. I can no longer push my body into forcibly staying awake for days at a time in order to be sitting a desk between, what are in this modern age, frankly arbitrary times (e.g. 9am-5pm). If I could work to my own body-clock, I wouldn't suffer from the sleep deprivation that has effectively ended my career, however no employer will take on somebody who has such an unpredictable schedule. Employers claim to be "flexible" but they are not. Flexibility to an employer is half an hour or an hour differences, not wildly erratic differences of many hours.

Even allowing my body-clock to do as it wishes is problematic as not all the body's systems follow the sleep/wake cycle. As I mentioned earlier, this leads to, for example, problems with digestion, amongst other things.

I think to begin with, I may have had Delayed Sleep Phase Syndrome (see www.circadiansleepdisorders.org/defs.php for the definition), which over time transformed into Non-24. My gut feeling is that if I hadn't spent all the earlier years fighting my body-clock, I might still be DSPS and not Non-24, and I would at least have some regularity in my life. As I say, this is only how I feel and not a medical opinion, but I think it bears consideration. Don't think that my mention DSPS there insinuates that it's a 'lesser' condition: it certainly is not. DSPS is also severely disruptive and should not be taken lightly.

It took twenty years from my first symptoms of sleep problems until my diagnosis of Non-24 and during that time many parts of my life were hell. To be perfectly honest, other than knowing that what I have is real and that it has a name, my life's not much better now.

I am now unable to work at all, and I've had to fight and I MEAN FIGHT to get Employment and Support Allowance (ESA). ESA is a state benefit in England, which is for people who are unable to work due to illness.

To qualify for it I had to go through a 'medical assessment' done by a company called Atos and soon I have to go through it all again, just in case my life-long condition has miraculously fixed itself. I will not write here my feelings about Atos as it would not be appropriate, however I suggest that you use Google to search for any of the following:

Another state benefit here in the UK is Disability Living Allowance (DLA) - this is for people with disabilities and is to help with personal care and mobility. As such, unfortunately, I'm not entitled to DLA despite having a condition which impacts my life to such a huge degree, and which is recognised in the USA as a disability. I can't even get help from Social Services as I don't fall into the right categories.

Circadian disorders are invisible disabilities, and I might as well be invisible as far as the UK Government and the NHS are concerned. I have been prescribed melatonin which has to be ordered in from abroad at great expense to the NHS. It can be bought over the counter in the USA. I am supposed to be using a light-box to try and regulate my sleep patterns, however I can't afford one and the NHS is unwilling to pay for it.

ESA is the minimum the government reckons you can live on. I struggle to get by financially. When I was able to work, I had a decent wage. It was generally enough to live on without struggling too much. Now, at the age of 32 I have to rely on my parents to help me pay for such a frivolous luxury as gas for the heating (to American readers, I'm speaking of natural gas, the sort of gas a stove uses, not gasoline). I had to learn how to fix my washing machine as I simply couldn't afford to have it repaired, and I certainly couldn't afford a new one. The hinge on my fridge door broke months ago. The kettle leaks. The microwave door has a crack in it (only in the plastic, the microwaves are still shielded: I might be unemployable but I know enough about physics to know how to make sure it's safe to use!)

My social life is gone — even if I could afford to go to pubs or clubs, my condition makes it next to impossible. My friends very rarely try contacting me at all now as there is every chance I'll be asleep. I haven't been on a holiday in years. Stuck in this miserable grey country for years on end with no break, and even when it is sunny here I usually miss most or all of it due to the Non-24.

Shopping is difficult as I can no longer afford to drive and the nearest 24-hour supermarket is too far to walk with carrier bags holding weeks and weeks of food. I can't afford a taxi either.

Even if I could afford my own car, I can't afford the insurance, partly due to my postcode and partly due to having no job — both have pushed the quotes up beyond any reasonable amount. I ran a quote out of curiosity, for a car which was worth about £300 — the cheapest quote was £1400/year. The average was £7500/year and the highest was £18500/year.

When my body-clock is at such a point where I'm awake only during night time, I can't even clean the house properly — I live in a Victorian terrace and the vacuum cleaner (any vacuum cleaner) is too loud to operate after about 10pm. Even sweeping the stairs can be heard loudly through the walls.

Well done if you're still reading this. I know it's a lot to read, but I think I needed to write it, if only for myself. I feel that I've been let down so badly with regards to everything about this disease.

Please help sufferers of circadian disorders and other "invisible disabilities" to regain our lives. Make sure that people - your friends, family, colleagues and the medical community - know that we exist. Help us to stop being invisible.

Mark
Liverpool, UK

© 2017 Circadian Sleep Disorders Network
Last modified Jul 15, 2017
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