In the dark: living with an invisible condition by: Ashleigh Price
Lauren Kirby was diagnosed with Narcolepsy and Cataplexy at just 13 years old. Now, five years on, Lauren reflects on her journey and talks about living life with an invisible condition.
What started out as a few sleepless nights and dozing off in class soon became something much more serious, however Lauren said it wasn’t until a teacher at school noticed her falling asleep in class and contacted her mother, that she knew something was wrong.
“I had a pretty strict teacher who was noticing it and he eventually contacted my mum to make sure I was getting enough sleep at night. That’s probably when my mum realised something was wrong, because I was sleeping at night,” Lauren said.
“We went to a GP first and then they referred me to a Doctor in Brisbane, who specialised in respiratory and sleep disorders in kids. That’s where I was first diagnosed.”
Narcolepsy causes extreme daytime sleepiness (EDS) as a result of not getting REM sleep at night and Cataplexy causes muscle weakness, usually the result of an emotional trigger. For Lauren, this was laughter.
“I was about thirteen years old, I don’t remember what I was laughing at exactly, but I just noticed that as I was laughing my legs felt like jelly,” Lauren said.
Although Narcolepsy and Cataplexy are life-long conditions; if properly medicated and managed, most people can live with relative ease. However, like many other chronic conditions, Narcolepsy and Cataplexy can have a devastating impact on an individual’s life if a diagnosis is not made.
An estimated 25% of people with Narcolepsy receive a correct diagnosis (1), despite the condition affecting 1 in 2000 (2) and this may be because of the fact that most of our understanding of Narcolepsy and Cataplexy has only happened in the last 20 years.
Despite the odds, Lauren’s doctors came to an initial diagnosis quickly but with it came an extensive list of medications.
“When I was first diagnosed with Narcolepsy I was given Dexamphetamine, which helped to make me more alert and then after about two years of taking that, I kind of became immune to it. So, I changed to Modafinil,” said Lauren.
“I take two in the morning and another two at roughly 1pm and I also take Venlafixine, which is actually an anti-depressant drug, which can be prescribed for Cataplexy.”
However, as with any medication, side effects are a risk and when Lauren was prescribed Xyrem, a Sodium Oxybate solution that induces deep REM sleep, the side effects were not worth the benefits.
Lauren’s mother, Linda Kirby initially believed that the Sodium Oxybate solution was a good fit. However, after only a few months on the new medication, Lauren began to experience side effects. Linda said the side effects were awful and they eventually made the decision to discontinue the medication.
“She had extreme nightmares, extreme talking in her sleep like a zombie, sleep walking and sleep eating,” Linda said.
“She had little memory of the night eating, but she was, of course, putting on weight and the stress and worrying that came with that was awful.
“We made the decision to stop it and she has been much brighter and happier since.”
Linda said her role as Lauren’s Carer is not too far beyond the scope of normal parenting and that as Lauren got older and more independent, she required less assistance.
“Lauren doesn’t require assistance with her medication now as she is nearly 18 years old and manages it herself,” Linda said.
“The only real assistance I give Lauren is getting her to school and anywhere she wants to go, as she cannot drive. She may be able to drive later on but I’ve told Lauren I will be her driver, wherever she wants to go, I am her ‘lift’.”
Accepting and adjusting to life with Narcolepsy was difficult, but for Lauren, one of the hardest things is dealing with how people make assumptions about her condition.
“It’s not like it’s a secret but it hasn’t always been easy to tell people about my Narcolepsy and Cataplexy, they don’t know how to react or behave,” Lauren said.
Lauren’s long-term boyfriend, Nicolas Price, admits he didn’t know how to react to her Narcolepsy at first, however his whole thinking changed after he experienced one of Lauren’s attacks first-hand.
“I think it’s lack of knowledge,” Nicolas said. “I was scared to be alone with her because I thought she may pass out or have an attack at any moment. But it’s nothing like that.
“It wasn’t until I actually saw it happen, that I really understood what it was and in that moment, I guess I wasn’t scared at all. It’s just a thing she deals with.”
Conversation and openness about her condition helps to address any misunderstanding around it, with Lauren saying people should be able to ask questions without fear of offending.
“Without conversation, how can we ever expect other people to understand. I think a lot of discrimination comes from misunderstanding,” Lauren said.
“If my experiences have taught me anything, it’s that a little openness can go a long way in letting someone in to your life and helping them understand you.
“I think that it’s important that we give people that opportunity.”
Looking back over the past 5 years, Linda acknowledges that Lauren’s diagnosis has definitely been a journey and like any journey, she’s had her up and downs.
“It has been quite difficult for Lauren because she is so tired all the time. It affected how she felt about nearly everything in her life,” Linda said.
“She still feels tired but as she has grown up she learnt when she feels best and when to schedule activities.
“In saying all that, Lauren is a very bright, intelligent and happy girl. She has an amazing sense of humour and she has not let her diagnosis of Narcolepsy change her.”