The Good and Bad of Online Communities

Do you belong to an online community or support group? These days, I think it’s safe to say that it’s rare to find someone who doesn’t. The world has drastically changed in recent years thanks to the increasing use of social media platforms — even more since the 2020 pandemic — and virtual reality is becoming our new normal.

For those of us living with chronic conditions like narcolepsy, online communities have had a profound impact on our lives in many ways. However, like anything in life, it’s important to be aware that there are good and bad sides to everything.

The 'good side' of online support groups

There are numerous advantages that come with being a part of an online health community or support group, such as:

• Receiving emotional support
• Fostering relationships
• Sharing experiences

Being a part of a community that understands what you are going through and relates to your struggles and challenges is 1 of the key benefits of these groups.

Working through denial

For the first 2 years following my diagnosis, my denial prevented me from reaching out to other people with my condition. I was only able to realise how crucial it is to talk to people that relate to you when I finally decided to reach out.

It helped me to realise that I wasn’t alone and that many of the things I was experiencing weren’t happening because I was "crazy." Through sharing and hearing about different experiences, I felt as though I had discovered an entire world where I actually belonged.

Finding people who 'speak your language'

Although I have many friends outside these communities, there’s a different kind of special connection you have with people that "speak your language."

Furthermore, although medical support is undeniably vital, it can be extremely difficult to find the right kind of support. This is an additional way in which online communities can also help, as they will likely have people who can offer you unique tips and advice that you may not get from a doctor.

The 'bad side' of online support groups

While there are many benefits that an online community can provide, there are unfortunately also some negative aspects that are important to consider, such as:

• Inaccurate information
• Feelings of comparison
• “Emotional contagion”

Battling misinformation

Social media has proved to be a double-edged sword, depending on how it is used. Unfortunately, this can mean that a lot of misinformation can be spread easily, and can at times prove difficult to verify.

It’s important for us to always check whether the information provided is accurate, or maybe get a second opinion.

Comparing ourselves to others with our condition

On another note, while dealing with people that have the same condition can be a great thing, it can also subconsciously lead to thoughts of comparison. When we see someone who has the same condition as us seemingly doing so much more with their lives, it’s easy to feel as though there is something wrong with us.

However unwelcome these thoughts are, it’s important to know that they are very normal.

When our emotional states become 'contagious'

Lastly, "emotional contagion" refers to “the idea that emotional states and related behaviours can spread rapidly among people without their awareness.”¹

It has been reported that our emotional state can be influenced by many factors in our surroundings. When speaking of online communities and support groups, an example of this could be feeling upset by negative experiences shared in the community on a frequent basis. Another example could be an increasing focus on a symptom of your condition the more that it is brought up by others.²

Everyone's needs and experiences are different

At the end of the day, everyone is different and every experience is different. The aim of this article is not to assess the importance of these groups, because it is indisputable that they are highly beneficial in general.

The important thing to always remember is that living with a chronic condition like narcolepsy requires balance overall. While it’s great to participate in online communities and groups, we should remember that even this requires balance in order to be beneficial.