Depression is a MASSIVE issue for people with narcolepsy. It’s been suggested that narcoleptics are more than 6 times more likely than the average person to experience depression, and are also predisposed to other mental health issues such as anxiety.
People with narcolepsy have a difficult time with depression and negative thought patterns for a whole host of reasons, which you can read more about in the guidebook. With this is mind, I’m doing this series of posts about ways of changing our everyday thinking and behaviour to help combat depression.
It may sound a bit hippy-dippy to talk about things in this way, but rest assured: I’m a person who pretty much only responds to a logical argument and scientific evidence. In terms of our ability to battle depression, I find the concept of neuroplasticity really comforting. This is the idea that our brains are almost infinitely malleable in the ways that they work, and that the more we use our brains for one purpose, the better they get at that type of thought e.g. if we do lots of maths, we get great at maths. This also works for emotional thinking, so learning to guide our thinking in more productive (and dare I say positive!) ways may start out seeming like a strange chore, but eventually become second nature and have really noticeable effects on our lives.*
What i’d specifically like to talk about today is changing the way we think about our condition to lead to less feelings of failure and disappointment. To me, this involves setting realistic expectations and sticking to them. In this post, i’m just going to explain a bit about what I mean by “setting realistic expectations”?
It all starts in the doctors office when we are first diagnosed. From what I have heard from many, many narcolepsy patients, a large number of doctors are simply diagnosing patients with narcolepsy, handing them some medication and sending them on their way… which leaves many with the expectation that they will just start taking this medication and their life will return to normal.
Now I don’t know about you, but I have never heard of a case where this happens.
The fact of the matter is that narcolepsy is a neurological condition that fundamentally changes the way that your brain works. No medication that is currently available is going to be able to fix that. Don’t get me wrong, medication is an amazing help and I don’t think I could get by without it; but it won’t magically solve all your problems, no matter what your dose is.
At this point, we have a choice. We can sit around feeling sorry for ourselves because our medication only does so much to help and it seems like there is nothing more we can do about it, or we can accept that there are certain things beyond our control and work really hard on the things that we can to improve our own lives. Personally I think the latter is a far more preferable option.
So this is what i’m talking about when I talk about setting realistic expectations: not expecting that we should be living like “everyone else”. And this doesn’t just apply to people with narcolepsy – the “everyone else” that exist in our minds probably have their own issues to deal with anyway. Comparing yourself to other people is normal, but in many situations it is entirely pointless and will just end up making you feel bad for no reason.
When you don’t have that expectation that you should be like the people around you, doing something different doesn’t seem like a failure, and it can actually be quite empowering to really figure out what works best for you and just do it (even if it seems a little strange to others). This is not about giving up and saying “I can’t have what other people have”, it’s about asking “what do I want for myself” and figuring out how you can get it in a way that works for you.
Here’s just one small example of changing expectations in my own life: I have found through trial and error that it is best for me to eat small amounts of food consistently throughout the day, especially at times when I am taking my medication. This prevents me from getting the more severe “come down” effects of my medication such as headaches and acute anxiety. Sometimes eating all the time basically makes me feel like a big piggy, which is pretty unfounded since I’m a fairly average size for my height. It’s taken me a while to get used to it, especially at work when I’m sitting there munching on things all day and other girls just go out and have a sushi roll in the afternoon. Now I have grown more confident in doing what works for me, as I know that if I tried to get by on one sushi roll I’d have to go home around 2pm so that I could roll around in bed moaning with a brain-splitting headache (actually did something similar once – not a fun day!)
As I said, that’s one small thing, and that alone may seem like it makes a trivial amount of difference; but when you apply this thinking to all the various aspects of your life, you end up with a whole range of different strategies for making your life easier. When you put them all together, this leads to a much happier and healthier outcome.
Here’s a little list of some other things I do in my life vs. what I might have previously expected my life would be like (or what other people still expect):
That’s just a few of the main ones that come to mind. As you can see, the “expectations” that I’ve listed might not be what everyone expects, and they may be unrealistic expectations, but this is what I’m talking about. Give yourself permission to cast aside any thoughts of “oh but I really should be doing this” or “everyone else is doing this” and just do what you know will work.
Of course, part of setting realistic expectations is having the absolute intention of following them, even when it’s difficult…
In my next post I’ll be talking more about how to get and maintain the motivation to stick to expectations we set for ourselves, and just to live a better life in general. Motivation is an incredibly common issue for people with narcolepsy, but luckily there are things we can do about it!
*Clarification: I’m not suggesting that all depression is curable simply by thinking your way out of it. However, for many people with narcolepsy, depression is a secondary symptom and learning to control our thoughts and behaviours can be enough to keep it at bay.