From Denial to Advocacy: A Difficult Journey
When I first started experiencing symptoms of narcolepsy, I spent months wondering what was wrong with me. This turned into spending months pushing for help and a diagnosis. The diagnosis eventually came.
I remember my feelings being so mixed. There was a sense of relief because I could now finally start taking medication. I could hopefully somewhat start to function again. However, that feeling very quickly wore off.
I had this sinking feeling. I had narcolepsy and cataplexy and this was with me for the rest of my life. Nobody understood what I was going through and I felt unbelievably alone.
Stuck in denial
Before researching my symptoms, I knew very little about narcolepsy. All I knew was what I had seen joked about in the media. Consequently, when I was diagnosed I felt embarrassed and ashamed. I was now this person who had narcolepsy. This disorder that is humorous and makes you lazy. I almost instantly took on all of the stigma associated with narcolepsy. I no longer wanted this diagnosis that I had been so desperate for before.
For months after, I found myself unable to say "narcolepsy" or "cataplexy". When I wanted to talk about it, I would refer to it as "my thing" or "the thing when I laugh". Hearing and reading the words "narcolepsy" and "cataplexy" made me feel physically sick. I only told people if I absolutely had to. Looking back, I would say that I was in complete denial. I did not want to come to terms with my diagnosis.
Online communities changed my life
After some time, I ended up joining some Facebook support groups. This was a huge turning point. Although I didn’t engage much, just reading people’s stories and experiences was so helpful. Knowing that there were other people with this disorder and with similar struggles to mine.
Slowly, I came to terms with my diagnosis and was able to say "narcolepsy" and "cataplexy". I felt less alone and couldn’t believe that there were people who understood.
Learning about narcolepsy from others' experiences
Not only that, there were conversations about things that I didn’t even realise were related to narcolepsy. For example, I was criticising myself and was so ashamed of eating at night and my weight gain. Both of which, through the Facebook groups, I learned are linked to narcolepsy.
There were other people who were experiencing what I was going through. This began my journey to accepting my diagnosis. Nevertheless, I was still quiet and only told people if I had to.
From acceptance to advocacy
I saw a girl from my university on a TV program where she used the opportunity to raise awareness of narcolepsy. Seeing someone I related to talking openly about narcolepsy helped me to learn not to be ashamed of having narcolepsy. This helped me to talk more openly about narcolepsy.
When talking to people about it (extended family, work colleagues and friends), I realised that they actually had little to no idea about it. Nor did they know how much of a struggle living with narcolepsy is. The shame that I felt in the beginning prevented me from talking about what I was going through.
The only people who had real insight into my struggles were my mom, close family, and housemates from university. I found myself frustrated and sad that there was a lack of knowledge. As time went on, I began to realise that if I want there to be more awareness of narcolepsy, I need to be a part of the conversation.
Joining the conversation
Leaving university, I found myself missing writing. This is what encouraged me to start writing my blog. Even if it doesn’t reach a huge amount of people, it has been so helpful for my friends and family to read - I had so many comments that they had no idea about the struggles that I go through on a daily basis.
This is why it is so important to be a part of the conversation. To educate friends and family, but also to show people that it is okay to talk about it. It isn’t something that you should be ashamed of.
There are people who understand
My journey from denial to advocacy was not easy nor did it happen overnight. Not everybody will feel comfortable in being open about their experience and that’s okay. Reading other people’s stories is what helped me so much which is why I want to share my story.
If you have or think you have narcolepsy and are feeling alone and like nobody understands, I cannot recommend joining online communities enough. They show you that you are not alone and there are people who understand.
Do you feel that your doctor understands narcolepsy?