Tuesday, 1 May 2012

I'm sorry, but I do actually have a life (BADD)

Non-24-Hour Sleep-Wake Disorder is, as I experience it, a prototypical "social disability". Day to day I experience no symptoms. Yeah, even subjectively my condition has no symptoms. I'm on no medication.

I am, instead, disabled by the people and social structures that surround me. The 26-hour man can't fit into the 24-hour world. The banks close, the offices close, the shops close, even hospitals dwindle into a largely passive state as the higher-ups clock off. My body goes nocturnal for weeks at at time, but unpredictable enough to make shift work impossible. I can physically and psychologically 'cope' on an enforced 'social' schedule for about 2 days before the shit hits the fan. These two days can take up to 2 weeks to recover from.

I'm a bad sickie. I'm not the sort you can package and put into a feel-good piece in Hello. I get angry about the things around me; the prejudice and oppression, the hatred and the despair. I shout and cry and kick up a fuss. Perhaps the 'worst' aspect of me, though, is that I don't want to get better. I see society as the thing that is "broken", not me. I'm formalising the idea that circadian rhythm variances are just another unappreciated from of human variation.

I've been under the care of a consultant neurologist for something approaching 18 months now. Before that, I had something like 8 referrals to various consultants in varying specialities, after trying various GPs for 5 years or so to get a referral. I've played the medical games and jumped through their hoops.

Every treatment has made me feel 'worse', and had no effect on my circadian rhythm in the slightest. My neurologist, in a bit of a Hail Mary, suggested something which made me cringe. She wanted to admit me for a week, and have me physically forced awake and drugged with Modafinil every morning, then sedated into unconsciousness every night. That sounds like torture. Other members of the Circadian Rhythm Disorder community were shocked. I wasn't; it's just a repackaging of every other "treatment" we've all been told to try, except a bit more forceful. There was no reason to expect it to work, I foresaw more damage than gain. And I refused.

Those around me were outraged. I'm on Employment And Support Allowance, and have been for about 18 months. I have a moral obligation to 'get better' so I don't drain the state dry, they cried. Someone even reported me for fraud when I refused that 'treatment'. People apparently think I lack the right to make decisions about my own body.

Someone else was worse; and I make a point of not discussing my condition with her. She's a naive ableist. "There has to be a treatment", apparently. I should "accept doctors know more than [me]", when more often than not they don't. I consider a doctor "good" if they even know what a circadian rhythm is. It's not some New-Age hippy rubbish, it's a well known and essential part of human biology and neuroscience.

There was worse to come.

"If the treatment worked, you could get your life back. All that hard work wouldn't have been a waste".

The 'hard work' she is talking about is what other people would call 'an education'. I have two degrees; a BSc (Hons) First Class and an MSc with Distinction. I seem to remember when education for its own sake was seen as a noble endeavour. Anyway, I digress..

The obvious implicit assumption here is that I can make no use of an education, what being a 'lifeless' sickie. Insult me in any way you wish and it would probably be accurate, but I am not 'worthless' and 'a waste'. I contribute to my society. I try to improve it politically, and I do research that could actually improve a lot of peoples' lives. One piece, on improving well-being of Undergraduates, is being submitted for publication. The other, a phenomenological piece on peoples' experiences of N24 is currently under-way. I'm contributing, in spite of my condition and my 'inability to work'.

I, quite frankly, have a life. I still do the things I enjoy. I smile, and I laugh. I get too drunk. I cry. I find joy in some things, sadness in others. I have hopes and I have dreams. I have love and I have sex. I have my life. I've lost ambitions for my career, I've lost the hope that I will live a "normal" life. I'm afraid of certain things in the future; missing out a sentence in my ESA50 reducing my income to £0, or living in poverty. What I thought my life is, and what I thought it was going to be, forever changed when my condition was recognised. My life wasn't destroyed or stolen; it was changed.

People with disabilities, from every walk of life, 'contribute' to society. This can be small unpaid contributions to scientific endeavour such as mine; it can be the incredible campaigning of the Broken Of Britain, Sue, Kailya and that gang, it can be the people in local and national government (e.g. Barrenness Grey-Thompson), or it can be the child who brings a smile to their parents' faces.

We disabled people have worth, and we most certainly have "lives". You think otherwise at your peril.


  1. "I see society as the thing that is "broken", not me."

    I agree! I don't know why we seem obsessed with forcing people into all the same mold and calling it failure if they don't fit.

    Variety is good! It's important for the health of our species.

  2. Loved the article, Jon; and, I also agree with Ruth's comment.

    Cheers! %)

  3. When I wrote my newest medical book, I mentioned circadian rhythm disorders as an example of an illness created by society: something that wouldn't even exist if the society was more flexible.

    It's sad that unpaid/non 9-5 work is often seen as something worthless. Doesn't go just for disabled people, but e.g. for those taking care of the family at home. For some reason many people think being at home with kids is kind of like a long holiday, since you "aren't working". Go figure. I don't even have kids and just thinking about it exhausts me.

    This text raises many important ethical questions.

    1. Hi Maija,

      CRDs getting even a look-in in medical texts is a step in the right direction! You may like to have a gander at http://www.sleep-journal.com/article/S1389-9457%2811%2900221-8/abstract if you can get it; it's quite disturbing to see the low status of sleep medicine :(

      I think CRDs are quite interesting, from the pespective of letting us look at the instersection of the 'physiology' and concepts of 'illness'.

      I think the very fact my circadian rhythm won't entrain to any of the zeitgebers is enough evidence of something 'physiolgically' different about me (along with lab findings like N24s not producing melatonin for example). Are rare physiological... anomolies, in isolation, an illness or are they a cause of illness?

      ASPS and DSPS muddy the water even more, going as far as to be considered "normal" depending on the time of life they occur. Food for thought, no?

  4. "People with disabilities, from every walk of life, 'contribute' to society."

    Amen to that.

    It's vital, now so more than ever, that the wider society is made aware of what we do contribute to that society.

    Thanks for a great post Jon.

    Cheers! :)

  5. "It was changed" : Exactly. Such a great post.

  6. As a fan of supernatural fiction, I find myself thinking of how various books show the way that vampires being nocturnal interacts with society. For example in one of the Sookie Stackhouse novels, a vampire asks a human friend to help him get a hardware store to do repairs on his home - even though, in that setting, vampires are known to the general public, the hardware store was still unwilling to accomodate him by having service available at night. It's surprising to think of just how many little things in our society assume you have a standard circadian rhythm.

  7. Perhaps if society was more accepting, they would find that that many neurological "disorders" are actually part of natural human variation. Neurodiversity could be accepted just like cultural diversity is in the years to come. That's my hope anyway.

  8. Im going to be making a video about my non24 and my daily life. Would you mind if I used some of your quotes from some of your blogs in the video with your name at the bottom?