The Narcoleptic Metamorphosis: From Social Butterfly to Hermit

By Kerly Joy Bwoga

4 min read

Growing up, I was always a social butterfly. I always had friends over, was always attending events like concerts and poetry nights. The last thing anyone would have called me was a homebody.

If you had asked teenage me before narcolepsy what she thought turning 40 would look like, she would have described a life that looks very little like the one I now live.

Relationships change naturally over time

I have always been pretty good at maintaining friendships. I love my friends and have invested in those relationships. I am proud to still remain friends with people I have known since I was 7 and went to high school with.

However, I can also appreciate that life has a way of causing some distance in relationships (work, family, and everyday hustles often keep everyone very busy), and COVID-19 easily may have added to feelings of isolation. If I look back at the last 20-plus years since I have been living with and been diagnosed with narcolepsy, I can see a trend.

Struggling to find a balance

In the years following my diagnosis, I was busy. I was studying at college and university. I moved twice, was working, and although the lifestyle was exhausting and I was having more frequent cataplexy attacks, I still maintained a social life. I went to church regularly, went to concerts, and did not have to think twice before attending an event with a friend or going out to celebrate their birthdays.

Recently I have been struggling with finding the balance between what is best for me and my health, what I would love to do, and not disappointing others.

Forced to consider how social plans will affect me

This all came to the forefront recently with my 40th birthday coming next year and my friends starting to plan their 40th celebrations as well. I was invited by 2 friends to their 40th birthday celebrations, both of whom I have known since I was 11. I treasure the time we spend together.

Both the events look amazing, but I can’t just look at it like I would have at 21. I’m forced to consider how attending the events and fitting them into my recently busy schedule will affect me.

The impact of narcolepsy on my activities

At present, I am completing a new college course twice a week, which leaves me knackered. The college is 25 minutes from my house, and most days I need the help of my carer to ensure I arrive on time.

I do not regularly attend my church, as the journey to church would leave me exhausted, and I would most likely miss my stop unless I had someone accompanying me. I have found myself back at my mother's church and viewing church online most weeks.

This is especially hard, as even as recently as 5 to 7 years ago I was regularly attending church, had a big circle of friends there that I saw and hung out with regularly, and played an active role in the service. Now, most weeks I am watching from the outside.

Weighing personal safety versus quality time with friends

One of the biggest dilemmas I find myself facing regarding the upcoming birthday parties is safety versus making fun memories, and not wanting to disappoint either my friends or myself by not attending the parties.

The safest way to get to the parties would be to take a cab there and back; that way, when I'm falling asleep during the journey in areas I am not familiar with, I am not in a vulnerable position. While new places are easily navigated during the day, at night when coming in and out of sleep it is very easy to become disorientated, which would not be safe.

At the same time, I want to make these memories. I want to have that fun quality time spent with friends. I want to stop the metamorphosis I see occurring from social butterfly to hermit.

I never thought the day would come

I have been finding that narcolepsy has been stripping me of my social activities a lot lately. It feels like I have no social life, and I think that is why I have been feeling more pressure regarding attending these events. Like I am pushing against the grain, covered in splinters, but still not ready to change direction. That I ought to just suck it up go and have a good time, as these are big life moments we are celebrating, and then I can just crash the next day.

I feel like I haven’t been socialising, and it is a big deal. I keep telling myself I should make exceptions and not allow narcolepsy to dictate everything about my life. I also do not want to stop being invited to events, since my friends may feel I always say no.

It is just a little funny. I used to have a very active social life and never thought the day would come when it would be so hard to just make a decision to go out.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Fiona Mobbs Member
<inline-mention username="Kerly Joy Bwoga" user-id="4143019"/> great article and I can totally relate to going from a social butterfly to hermit. As more and more time passes and the struggles of living with narcolepsy come up against the lack of understanding of friends, it's often much easier and less stressful for me to just stay at home where I feel safe and away from triggers and the judgement of others. But knowing that is not good for my mental well-being long term, I push myself to socialise when, where and how I can, within the limitations of my narcolepsy symptoms. That way I still catch up and see my friends, but I don't end up 'paying' for it for days later! 
1. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="Fiona Mobbs" user-id="4247693"/> I wish so badly that I was as brave as you! I've always been hard-of-hearing, and have trouble advocating for those needs too. Unfortunately the world isn't the greatest at accommodating people with disabilities. I feel like my relationships would be much healthier if I could just learn to say what I need when I need it, without fear! (And have others understand.) Some friends use my narcolepsy as an excuse to exclude me from nighttime activities for example, but that hurts too. I'd rather be able to make the choice for myself than not get invited at all. It's good to know that there are others in our community who understand this! Some of my closest friends have narcolepsy. I think it's because we understand and empathize with each other. It can make a world of a difference. Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)
2. Kerly Joy Bwoga Moderator & Contributor
 <inline-mention username="Tatiana Corbitt" user-id="4122413"/> Glad, you could relate to this. I was not always brave. It took a while to get to this point and I believe you will get there too. I agree having friends with Narcolepsy definitely helps a lot. Kerly (team member)
Gabrielle Keith Moderator & Contributor
<inline-mention username="Kerly Joy Bwoga" user-id="4143019"/> You have been so open and vulnerable in this article which is so admirable. I have to be honest, I've seen a decline in my social life since my diagnosis, and I'm only 27. I have some fears about how narcolepsy might change me in the future, but I guess I have to take things as they come. Thanks for being so honest about your experiences. I hope you can find the energy to celebrate with your friends, even if briefly. I can understand the FOMO that comes with missing big events like that. Xoxo/Zzz, Gabrielle (team member)
1. Kerly Joy Bwoga Moderator & Contributor
 <inline-mention username="Gabrielle Keith" user-id="4121514"/> I worry about the future too. Hun best thing I can advice is don't put things off. Live your life as full as possible, so when the changes come at least you have good memories stored up.
Tatiana Corbitt Moderator & Contributor
<inline-mention username="Kerly Joy Bwoga" user-id="4143019"/> Thank you for writing this article, it is so validating! I can really relate to the feeling of isolation that comes with narcolepsy. Our symptoms are chronic, and often disabling. If I had a dime for every activity I had to cancel, opportunity I had to pass up, etc. due to narcolepsy - I would be very rich indeed! It isn't easy navigating relationships with narcolepsy either - some people aren't very understanding when it comes to our condition, which can weigh on us mentally. Especially since narcolepsy is something we cannot control. Stay strong! Warm regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)
1. Kerly Joy Bwoga Moderator & Contributor
 <inline-mention username="Tatiana Corbitt" user-id="4122413"/> Thanks hun, I am learning a lot about navigating relationships which is quite humbling, as I never had a problem in this area before. Making and keeping friends came easy to me in the past. Now it really takes a lot of energy and time.