Invisible Illnesses – Ar’s Story – Narcolepsy

Every Friday I will be highlighting an invisible illness, we all know they exist but exactly how much do we know about these conditions and the people that suffer from them? I myself have an invisible condition and it is very easy for people to assume that because I look OK and I walk,talk and act OK that I am fine when quite often this is far from the truth.

This week brave and incredible Ar shares with us what it is like living with the neurological condition narcolepsy.

Please could you introduce yourself, tell us a little bit about yourself. What you enjoy doing.

I’m Ar, I’m 34 (ugh) and have a 4 year old daughter. I’m an artist, writer and teacher. I live up in the North-East and work for myself, running two businesses and a blog, so it’s a bit full on! I’m also an amateur rugby player and am currently working hard on building my physical health up as part of that. I love to write and do design work when I’m not busy running around after my little girl, and I’m a bit of a Twitter addict.

What is your invisible illness?

I have Narcolepsy, which is a rare neurological condition that affects the brain’s ability to regulate the sleep-wake cycle. It’s most commonly understood as a sleep disorder. There are two typical forms.

The first is narcolepsy with cataplexy, which is the involuntary loss of muscle control which leads to sudden bouts of sleep, wherever you might be.

The second is narcolepsy without cataplexy. The symptoms and effects of narcolepsy include disturbed (very fucking disturbed in my case) night-time sleep, excessive daytime sleepiness (EDS) and other neurological issues that occur as a knock-on effect of the condition. Imagine having a sleep-deprivation hangover every day and you’re halfway there.

I have the second form of it, which I feel fortunate about, but that’s not to say I’ve got away with it lightly.

When did you first notice your symptoms?

I didn’t really start to notice things until I was 26. It was a really frightening experience for me, to be honest. I had always had bizarre dreams and a feeling of exhaustion,but I just assumed it was teenage stuff, young adult angst at a push. It peaked about two years into my first job, when I suddenly just hit the wall mentally and physically. I couldn’t get up. I could barely string a coherent sentence together without bursting into tears.

I started seeing things. Horrific, nightmarish vision. Of course, there was nothing there. I began to think I was losing my mind, whilst trying to hold it together in my daily job, being responsible for classes of children. A tired mind plays horrendous tricks on you, and when you don’t know what’s wrong, it’s very easy for people to assume that you’re losing your grip on reality.

What was it like getting diagnosed?

Terrifying. Purely because I was misdiagnosed at first, and spent six months of my life confused out of my mind, thinking I had a serious mental health condition that in truth I didn’t have. My world turned upside down as I took drugs I didn’t need to and basically wrote off an entire year of my life. It didn’t sit right with me though and so I pushed the doctors to send me for a brain scan – to rule out any possible physical cause such as epilepsy, for example. I knew in my gut that I didn’t have a psychiatric issue, and I was frightened about how easily labelled I’d been without any proper test having been carried out.

Eventually I went for the scan and they discovered the anomalies in my brain that the neurologist recognised as signs of narcolepsy. That man changed my life for the better when he assured me he knew what I was actually struggling with. A sleep disorder, NOT a mental health issue. I had to have further tests in hospital, a couple of which were a bit strange, but to be honest I was just so relieved to get an answer that finally made sense, and to get the medication I actually needed to help me recover and live a normal life again.

How does it affect your day to day life?

I take medication twice a day to help me stay awake and alert, and it really works well for me. As I said earlier, I’m lucky to have a milder form of the disorder, it’s a real spectrum condition and some people are really adversely affected by narcolepsy, it really hinders their ability to function. My biggest symptoms that can’t be treated or cured are the dreams/terrors and poor-quality sleep. My brain dreams much more intensely than others, and I can remember everything in vivid, start-to-finish detail. My own ones are particularly upsetting – sometimes I wake up crying, or sometimes I can’t actually wake myself out of it until the dream is complete.  So my body might go to bed, but my brain never fully switches off, so I wake up shattered most days.

I look like a normal person but my eye-bags tell another story!

Do people treat you differently because of your illness?

Not really. Not many people know about or understand narcolepsy that well really in my experience, and it’s not like it’s something people can see. Sometimes, even the people who know I have it forget that I have it, and that can be hard. Sometimes I forget, and then I have a really bad night and the next day is a really tough reminder that it’ll never fully go away. I don’t want to be treated differently anyway really, just a bit of consideration for my tiredness is all that’d be helpful at times.

What advice would you give to somebody else suffering from your condition or perhaps to somebody who may have symptoms?

To do your research, talk to your doctors and don’t let them make assumptions. You know your own body and your own mind best of all – don’t be fobbed off with a one size fits all diagnosis if you’re not happy with it.

If you do have a sleep disorder, know that there are more of us than you might think! Narcolepsy is one of the most under-diagnosed conditions in the UK, something that’s estimated to affect about 1 person in 2,500. That means that in the UK there are approximately 30,000 people who have narcolepsy, though it is believed that the majority have not been diagnosed. All those people, probably a lot of them just like me – who maybe haven’t the correct level of investigation into their conditions.

Do you know of any good groups or organisations of support for people with your illness?

Narcolepsy UK is a good place to start, and also there are some Facebook groups that aim to support you and your loved ones as you adjust to life with narcolepsy.

What are your goals for the future?

To continue writing and designing and building a success of my businesses, stay healthy and get physically stronger. I’d love to be able travel some more and hopefully one day I’ll be able to take my little girl on adventures to other countries so that she gets to experience the world as fully as possible and not feel restricted by anything.

 Visit Ar’s Blog

you can also find her on Twitter

Thank you so much Ar for sharing your story with me and all of my readers, I can’t imagine what it must be like to suffer with something that must be at times so terrifying.

Gut instinct is very rarely wrong and you was right to disagree with the doctors and their first diagnosis. I hear quite often that the doctors are quick to diagnose one thing and it turns out to be something completely different, it’s a constant reminder that if something doesn’t feel right then you should ask for a second opinion.

Thank you again.



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3 thoughts on “Invisible Illnesses – Ar’s Story – Narcolepsy

  1. Invisible illnesses come hand in hand with ignorance from people. My mother suffers from cronic fatigue and has been told she is lazy all her life. I can vouch for the fact that she is anything but, and is in constant pain.

  2. I was diagnosed with type one narcolepsy almost 3 years ago. My diagnosis came at 40 after 20 years of being miss diagnosed, changing doctors and 5, yes 5, sleep studies. They insisted it couldnt possibly be narcolepsy because i was heavy and mosr likely sleep apnea or a mental health condition. I have the same type of issues with sleep that Ar has only with cataplexy and it is terrifing. I had always wondered why my dreams were so scary and vivid. I would hear knocking and doors slamming while trying to fall asleep when nothing was really going on.
    Right now I take a medication at night to regulate my sleep cycle, its not working very well. I also take medication during the day to fight day time sleepiness, also not working real well.
    I too had sort of a break down and had to change my life a lot to help with my narcolepsy issues and people dont truely understand it. I fall asleep at family functions, i skip things that others enjoy doing because i am way to exhausted. I try to explain to people that my tired is not like theirs, its 100 times worse. Its all very frustrating!

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