6 Ways Narcolepsy Has Affected My Mental Health

Narcolepsy is a condition for which there is no cure. This means that those of us who have it will live with it for the rest of our lives.

This can obviously take a huge toll on mental health and it definitely has had a massive impact on my mental health in different ways.

1. Grief – losing who I was

When I eventually received my narcolepsy diagnosis that I was desperately pushing for, I instantly had a sinking feeling. The diagnosis was confirmation that this was a condition that was with me for life. I was now a person with narcolepsy, and I somehow had to accept this.

One of the first emotions I started to experience was a sense of grief. I was grieving for the person I once was — the person without narcolepsy.

Instead, I was now unable to do a lot of the things that I loved. Every day was a never-ending battle, and I was constantly tired and sleepy. I was desperate to be the person I was before narcolepsy – not having to even think twice about how sleepy it might make me before engaging in a task. I missed having a brain that wasn't constantly fighting against me.

2. Anxiety – cataplexy and sleep attacks

Before I was medicated, my anxiety around cataplexy was extremely high. Laughing, a very normal experience, became anxiety-provoking. I would be worried beforehand about potentially finding something funny and experiencing a cataplexy attack.

Anxious about laughing in public

Unable to predict when I may laugh and experience an attack, I was constantly worried and anxious about the possibility of it happening. This resulted in me feeling anxious about going out in public. I was especially worried about someone making me laugh when I was somewhere unsafe. I was scared about injuring myself.

Now that I am medicated, thankfully, that anxiety has reduced a lot. The medication isn't 100 percent effective, so the anxiety hasn't fully disappeared, but it is a lot more manageable.

Anxious about staying awake in transit

Additionally, being unable to stay awake also makes me feel very anxious about being in public. The biggest trigger for me was traveling alone, whether on public transport or in a taxi. It puts me in an extremely vulnerable state. When on public transport, I will wrap my bag around my wrist a few times and keep my valuables close to my body. If traveling by train, I will also set an alarm for 5 minutes before my train is due to arrive to reduce my anxiety about missing my stop.

Dealing with embarrassment

Furthermore, experiencing cataplexy and sleep attacks in public made me anxious because, ultimately, it made me embarrassed. Before I was more comfortable with my diagnosis, I was worried about the embarrassment of experiencing full-body muscle weakness. My face would look weird, and I'd be dropping to the floor but I couldn't explain what was going on. When this happened around new people, it meant that I had to share my diagnosis before I was comfortable with doing so.

3. Anxiety – nightmares

The vivid nightmares that I experience often leave me feeling scared of going to sleep. Some nights I'll be terrified because I don't know what the nightmares will bring that night. It also massively affects my mental health the day after. After a night of bad nightmares, I will be so anxious and experience dissociation. Not only that, but it also has a lasting effect on my mental health.

I can find myself experiencing intense anxiety when suddenly remembering nightmares I've had. I struggle to remember whether it has actually happened or not. It's like some of them have imprinted on my brain and now feel like actual memories. When these dreams are about graphic and terrifying topics such as murder and death, these feelings, like actual memories, leave me with severe anxiety.

4. Depression - living with an incurable condition

One of the most depressing things about narcolepsy is knowing that this is forever with no way of being able to cure it. It leaves me feeling deflated and frustrated that I cannot control this, and I will live the rest of my life with it.

There are things that I am unable to do or have had to change (e.g., I am not allowed to drive despite always wanting to). Some days are better than others, and I try not to let it get me down too much. Yet, there are days when it hits me all over again and I can end up feeling hopeless.

5. Loneliness - invisible illness and isolation

Having a long-term condition that affects your everyday life can be a really lonely experience, especially when the people around you don't fully understand. Narcolepsy is a hidden disability/illness, which means many people don't realise, or very quickly forget, that our symptoms impact us every single day.

I find it difficult to confide in people when I am struggling because I don't like to be a burden. The struggles are rarely anything new, so I worry about constantly complaining about the same thing. This means I often suffer in silence alone.

Additionally, missing out on social events because of narcolepsy is extremely isolating. Luckily, being part of online communities definitely helps to reduce loneliness.

6. Lack of support and adjusting

I had very little to no support when I was first diagnosed. There was a complete lack of professional help or support. Nor did I know if there was any available or where I could access it. I had to adjust to all of this alone (and still am adjusting to it). Consequently, it took an even worse toll on my mental health.

I didn't have a real outlet and I didn't know how to deal with it. It resulted in a lot of feelings of shame, embarrassment, and frustration. There were many things I was struggling with alone that I didn't fully understand.

It was only after joining online communities that I realised they were linked to narcolepsy. If I'd had support in the beginning, adjusting to my diagnosis may not have been such a tough and difficult experience.

Has narcolepsy affected your mental health? If so, in what ways?