So far in my series of Change your thinking posts I’ve covered some ways that you can adjust your own thought patterns and behaviours to help cope with narcolepsy. However, none of us live in a bubble, and nor should we! Today I am talking about the difference support can make in our lives.
To be able to live happy and well-adjusted lives, we need to be connected to other people. Even if you are a bit of an introvert (or suffer from social anxiety as many PWN do), I don’t think there is any sane person who truly wants to be completely alone. Forming and maintaining good relationships with people is a natural part of life for human beings, and avoiding this tends to have big negative impacts on our mental health.
I think people with narcolepsy have this urge to communicate even more than others, because many of us feel that we are quite disconnected from the rest of the world. Some people with narcolepsy deal with a lot of negativity due to the lack of understanding in society about our condition, and this means that a lot of narcoleptics learn to feel like they have to keep certain things bottled up, which can lead to a lot of pain in the long term.
Seeking kindred spirits
Even if you have very supportive family and friends, a person who doesn’t have narcolepsy is never going to fully understand that aspect of your life. For this reason, I think that getting in touch with other narcoleptics is one of the most life-changing things that you can do as a PWN. I can’t recommend it enough.
My first experience with other people with narcolepsy was actually when I was starting my original version of the Falling Asleep guidebook, back in my final year of university. I was trying to create something that spoke to people with narcolepsy; so I had to try and find some other narcoleptics to ask them whether my visions for the book made sense to them. After some quick googling, I found myself in a couple of Facebook groups specifically for people with narcolepsy.
To begin with, my only aim was to try to meet up with a couple of other people, just to gauge how similar (or different) our experiences were and whether they could relate to the proposition I was putting forward. I managed to convince someone to meet up with me in person, and after the inital awkwardness we talked for hours and hours about everything from dealing with people who called you lazy to the awkwardness of having to nap at house parties. This person was actually Alanna, who you’ll see in some of the pics on the site 🙂
Being able to talk to other people with narcolepsy both in real life and on Facebook opened my eyes to a whole new understanding of my life. One of the first things I realised was a particular experience that most narcoleptics had in common: the years before diagnosis spent blaming ourselves for not being able to stay awake, while everyone around us effortlessly continued their normal lives.
Over time I began to see how much damage this had done to my self-esteem, and how it had been the root of a lot of the depression that I experienced throughout high school. Reading similar comments from other people allowed me to see narcolepsy for what it was, something entirely outside of myself; a horrible condition that was causing the same horrible situations to play out across the lives of a vast array of different people. It took me quite a while to fully process this, but now I can say with confidence that I am not to blame for my sleepiness, nor the emotional pain that it caused me for a long time.
That’s just one aspect that has been particularly important to me, but being part of these groups allowed me to see a whole range of connections, and start to pinpoint the actual borders of where I end and my narcolepsy begins. It’s still a little hazy, but I am happy to say that with the help of these groups I feel like a whole person with narcolepsy attached, rather than a indistinguishable sleepy blob!
As I might have mentioned in previous posts, I’m not typically the kind of person who you’d think would run around telling people to join support groups, and I’m generally a big skeptic of anything that involves people gathering in big groups to hug each other (physically or mentally). However, the impact joining these groups has had on my life has been undeniable.
Having a place to discuss you narcolepsy-related issues with other people who both understand your problems and will also take the time to listen is really an invaluable tool in coping with a chronic condition like narcolepsy, especially when it is so easy to access at a time and place that suits you. Even if you don’t want to actively participate, even just seeing things about narcolepsy pop up on your newsfeed occasionally can be enough to remind you that you’re not the only one out there!
The other great thing about these groups is that you can actually learn so much just from talking to people. Narcolepsy has been hardly recognised by the medical community up until a couple of decades ago, and so there are many different aspects of the condition and its’ treatment that can go unnoticed by doctors, or haven’t yet been quantified by research. This is why it is important for us to band together and seek our own knowledge! I’m not suggesting we ditch doctors of course, just that it’s good to have both the medical and personal perspectives to draw from.
With that in mind, I’d like to suggest a couple of different groups to get you started. These are just ones that I happen to be part of or know about, but if you know of any other good ones please put it in a comment so that other people can find them!!
Narcolepsy-related Facebook groups
- Narcolepsy Support Australia – A general discussion group for PWN (and their families) in Australia. I assume that there are special groups for each country, so you’ll just have to use the search bar on Facebook to look for one relevant to you!
- YAWN (Young Adults With Narcolepsy) – This group is also pretty self-explanatory, a group for PWN aged 15-25(ish). I couldn’t resist joining when I saw the excellent name! Friendly group of people for when you have questions to ask about age-specific concerns like school, socialising, dating etc.
- Gluten-free PWN – This is a food & lifestyle-focused group with information about not just gluten-free but also paleo and low-carb diets, as well as other nutrition and lifestyle ideas.
- Narcolepsy Humor – Your daily dose of narcolepsy-related laughs. I like this group as it does help put a positive spin on things and reminds you not to take everything too seriously!
- Narcolepsy Art – You may not know it, but narcoleptics are a very creative bunch of people! If you’re interested in art of any kind, from drawing and painting to poetry or video, join a supportive community of like-minded artistic types that regularly post their own work. You can share whatever you’ve got!
- PWN Pen Pals – This is a great initiative where you can sign up to be pen-pals with another person with narcolepsy somewhere around the world. Letters can be as creative as you like, and many strong friendships have been created through the group.
- Narcolepsy/Cataplexy education group – Focused on educating people with and without narcolepsy and discussing the latest research on the topic.
All of the groups above (except the education group) are private groups so you don’t have to worry about your posts being seen by friends, family or co-workers and can rant to your heart’s content 😉
There are also about a billion other groups out there for things you would never even think of! Give the search bar a good workout and find one that suits you.
There are also a few websites that have discussion boards if you prefer not to use Facebook, such as the Narcolepsy Network forum.
Support Group Considerations
As great as support groups can be, there are also a couple of not-so-great aspects about these groups that we can all help avoid by thinking about what we read and write on them. They may seem obvious but sometimes it helps to be reminded!
Firstly, just be nice to people – and give people the benefit of the doubt. If someone gets something wrong explain it to them in a helpful way, there’s no need to be condescending. Remember that things can easily be misinterpreted through text, and take that into account when both reading and writing comments. Also, many of us get moody or confused when we are not fully alert, so give other people a break!
The next thing is about the line between anecdote and information… There is a lot of misinformation out there about narcolepsy. I encourage everyone to do their own research. People have a tendency to say things like “this medication is shit and doesn’t work!” when the reality is that different things will work for different people. This goes for diet and lifestyle changes as well. Be respectful of other people’s experiences – if they say something helped them, don’t just dismiss it outright. However, if people are making definitively false claims and spreading misinformation (e.g. saying they have somehow been “cured”) I would politely ask them to either rephrase what they are saying or take it down.
Finally, support groups are a great place to vent when you are having a really tough day or have been feeling down about your condition, but some people seem to have a tendency to get sucked down into it. Narcolepsy is obviously a big part of our lives, but it is not everything! Spending too much time on these groups can actually isolate you more from those around you by making you feel like you can only relate to other narcoleptics, so try to keep it balanced by spending time with real people as well.
This has been a pretty long post so I’m going to cut it off here, but in my next post I will talk about managing your real-life relationships; trying to help people understand your perspective and surrounding yourself with as much positive influence as possible.
Oh and don’t forget; if you are part of any groups or forums that you think other people might find useful, please post a link below!