Communities: Recognising Over Criticising

Although there’s much we don’t know about narcolepsy, there is one thing that we can all be sure of: it is different for everyone. As far as I know, there is no "typical" case of narcolepsy, as we all experience different symptoms to varying degrees. There are even symptoms that some experience and others don’t.

Every single one of us is unique, despite suffering from the same condition. So I find it incredibly bewildering that even within a chronic illness community, there can still exist so much judgment.

Joining the larger narcolepsy community

Despite being diagnosed in January 2018, I didn’t join the narcolepsy community until June 2020. This was mostly due to living in denial for over 2 years.

When I eventually did, I felt as though I had finally found somewhere I belonged. After 30 years of feeling absolutely alone in my struggles, I finally felt seen, heard, and most importantly, understood. I had never met such welcoming and supportive people, and for a while, I can't remember a single moment of negativity in any of the communities I belonged to.

Much sooner than I would have liked, however, this would soon be shattered.

I was shocked by the remarks being made in a popular group

I had joined a popular support group on Facebook, and despite not being a big contributor, I actively read the posts and commented. That is, until one day when I came across a particular post.

As I began to scroll through the comments, I was shocked by some of the remarks that people were making about a particular member of the community. Two things, in particular, troubled me about this entire exchange: firstly, the negative comments were being made about an advocate of the community; and secondly, the main agitators were the group moderators themselves.

I left the group shortly after.

We should be supporting each other instead of criticizing

A few years have passed since this incident, and while I’m happy to say that 90 percent of the interactions I have experienced and witnessed are extremely positive, there are still 10 percent that are not. From my personal experience, even this small percentage has the potential to cause serious damage.

As a chronic illness community, we all suffer from stigma. We fight every day to have our condition taken seriously and help people to understand how it affects us. We face so much adversity from "the outside world" — doctors, friends, and even family. We should be supporting each other instead of comparing and criticising.

We are all human first and foremost

Narcolepsy cannot be compared. Just because we struggle with it on varying levels, this should not mean that one person’s pain is above anyone else’s. We should not criticise the people who put themselves out there in order to advocate and raise awareness simply because we feel that their experience doesn’t reflect our own.

Ultimately, I think that aside from being a chronic illness community, we are all human first and foremost.

There is no measuring scale for narcolepsy

If there is anything that you take away from this article, I hope it is this: that we all do our best to recognise before we criticise. What does this mean? Let’s recognise that everyone has a right to tell their story the way they choose to do so. Let’s recognise that there is no measuring scale for narcolepsy; therefore, we should never compare our struggles to someone else’s.

And most importantly, let’s stop criticizing each other and support each other instead.