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However, I have never seen narcolepsy mentioned in literature about disability or on websites surrounding disabilities, and as we know many people with narcolepsy have had difficulty “proving” the real impact that their condition has on their life (and thus gaining the right to welfare, services, etc.) During the polls, I also received many messages describing why people would not label themselves as disabled, mostly along the lines of “I have narcolepsy but it doesn’t define me” or “Narcolepsy doesn’t stop me from living my life I know these comments were well-intentioned, and I’m happy for people who have reached that level of acceptance, but I’m sure plenty of people with other disabilities would say the same about their impairments while not feeling the need to defend themselves against the simple idea of having a disability. If I am rational about it, I know that I think narcolepsy is a disability, and being more readily labelled as such would help other people to understand that it does have a significant impact on our lives, as well as acknowledging the fact that other people with disabilities can also live relatively normal lives (just as some people with narcolepsy can).

With Xyrem, I don’t dream much at all, and I no longer feel like I’m being held hostage by my memories and dreams. I feel like I’m left without a concrete answer, and the possibility that it could be entirely down to my mental health is disheartening when I already feel like I’m giving my all to minimise my symptoms. While there is no shame in taking medication for your mental health when needed, I’m conflicted because I want to take as little medication as possible, and also have so much trouble being objective about my moods that I can’t ever say with certainty that I feel worse than I used to… Just a couple of related things to note here: As well as the anxiety, I’ve been having occasional periods of days where I feel quite depressed, and find my general motivation levels to be lower than before starting Xyrem (although it is hard to be sure). This whole post is probably a massive overshare, but I feel like there is a lot of talk about Xyrem out there and not a lot of real accounts of people’s experience that take all the good and the bad into account.

The “curse” of social media on society (particularly vulnerable millennials) has been a narrative that has been discussed endlessly over the past decade – but what if instead of letting it make us feel inadequate and alone, we used it as a tool for building a positive self-image and raising awareness of chronic/invisible illness? But I haven’t even started on one of the best aspects of social media for people with chronic illness – the community. I’m not going to argue that social media is always a positive influence, nor that it can’t be addictive – particularly for people with narcolepsy (including myself! ) I simply wish to point out that there are still plenty of benefits to social media when used in the right way, especially for people living with chronic illness.

Time spent relaxing while staying awake is really important in order to prevent burn out, and finding ways to do that can help us minimize feelings of anxiety and depression. Taking the time to do things that make you feel good is so important, and something that I feel people with chronic illness often struggle with. We feel that our time spent awake should only be spent on more “important” things than caring for ourselves, which is such a bad habit to fall into and does real damage to our self esteem (and our mental health in general). However, in your leisure time when you aren’t in a rush to do anything in particular, doing more than one thing at once can help with the most important task of all: staying awake.