Wednesday 11 May 2011

Living the label

A few months ago, I posted about getting my diagnosis of idiopathic hypersomnia. Anyone who's been given a diagnosis like this knows that the label and the meds are only the first step. Adjusting to the reality of a lifelong crippling condition is a much longer process.

I will have this disease, this illness, this incapacity for the next 60 years. Every morning, when I open my eyes, it will be there. Every morning, I will wonder, "Will the meds work today? Will I be able to function today?". Every night I will go to sleep thinking, "Did I set my alarm for too much sleep, or too little? Will I actually feel like I've slept in the morning? Will I be able to get out of bed? Will I be able to work tomorrow?". Every time I travel across a border, I will worry, "Do I have the right forms? Have the rules changed? Did the person I asked at the embassy know what they were talking about? Will I be arrested?".

This condition affects about one in 25,000 people. That means that in Brisbane there are perhaps eighty other people who have this. It's a grab-bag condition; the not-otherwise-specified category; the none of the above box. There is no specific set of symptoms, only symptoms that taken together, don't fit anywhere specific. It's enough to show there's something definitely wrong, and that it needs treatment, but that's all. And, unlike other grab-bag diagnoses, it has very few people in it, compared to the number of people in similar disorders. Narcolepsy, classified as a rare condition, is about 1 in 1500 people - or 16 times more common than idiopathic hypersomnia.

Given this, it isn't surprising that there is no known cause. There is no cure. There is also no research being done on finding a cause or a cure. It affects so few, and whilst it comprehensively screws over my ability to do anything, it's not life-threatening. There are far more urgent, more necessary medical issues that need the research, the funding, the understanding, and the cures. At least, there's a treatment.

Well, there kind of is. I don't know if it's just me, but some days, the meds don't work well enough. They work enough to keep me awake enough so that I'm not constantly going to sleep, but not enough so that I'm in any state resembling alert. I can get out of bed, shower, catch a bus, go to work - but I can't think, and it takes a tremendous effort to do anything other than stare blankly in the direction I'm facing at the time. I won't fall asleep for most of the day, but the usual midafternoon dip I will easily sleep through if given the opportunity. I already take a large fraction of the maximum daily dose - I can't go much higher on these meds. It simply isn't legal, to the best of my understanding.

I despair, sometimes. For the rest of my life, I know that awakening in the morning is going to be difficult, and that I may not be alert that day at all. I have serious doubts that I'll ever develop my career - who'd want an employee who carries these drugs, who despite that, can barely function some days, who has to call in sick because they're too sleepy to even get out of bed, despite the best modern medicine has to offer? My friendships have certainly suffered; I fall asleep at gatherings, or have to go early, or simply can't turn up at all. I can't make reliable commitments, because I have no certainty about whether I can physically keep them. I'm young, in the prime of life - if this is what I'm like now, I am truly terrified by how limited my life will be in my fifties, let alone older. How will I cope then?

How do I cope now?


  1. You partied hard with us at my 30th, 'til the early hours. I guess you live for the times it works, and try to get through the times it doesn't.

    I bet, by the time you're 50, you'll have lots of little coping strategies that you haven't worked out yet.

  2. *sigh* Wrote a really long reply, Blogger chewed it. I really don't have time to write it again, so going to have to summarise.

    What Lionell said. Also, medical breakthroughs pop up in unexpected places - perhaps a project researching something else will find an anomaly that will eventually help you.

    Most importantly, I don't think this will impact the friendships that matter most. Those of us who love you accept you as you are, and this is now part of you. When you're late because you slept in, when you have to leave early because you're too tired, when you have to cancel without notice because you can't face an evening out ... that's OK. It will never cause me to think any less of you. If anything, it means even more when we see each other because I know how you have to struggle to make it happen. I'll love you just the same if all you can spare me is ten minutes a month via IM.

    As for your career, as frustrating as it is to be held in a cage that makes it damn hard to work, don't fret about it too much. I would suggest going freelance or working for yourself, or perhaps volunteering as you can. All are potentially sustainable and satisfying options that allow you to be yourself. I think the hardest part, but the key, is to accept that this is the "new you". Just as you had to come to terms with ASD and ditching dairy, this is a part of you now. And you WILL make it work, just like you always have, because you're you - too damn stubborn to not make it work. ;)

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  4. Looking at idiopathic hypersomnia, it seems that I have experienced all the same symptoms except cataplexy and I am diagnosed with Chronic Fatigue Syndrome. I have had Chronic Fatigue Syndrome since age 12. Who diagnosed you?