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The Pros and Cons of Epilepsy Facebook Groups

The Pros and Cons of Epilepsy Facebook Groups

Lately, I’ve been thinking about all the support I’ve gained online over the past few years. I’m so thankful for the friendships I’ve made with fellow epilepsy warriors through social media (including Epilepsy Facebook Groups) and, of course, while working for the BC Epilepsy Society.

However, I’m also going to be honest. When I was first diagnosed with epilepsy, I joined a lot of Epilepsy Facebook Groups and, on reflection, I now know that there are pros and cons to this. In today’s article, I am going to look at the benefits and downsides of Epilepsy Facebook Groups.

The Good:

  • 24/7 Support and Access: You can post your message or read messages from others at all times, day or night. This means that you can reach out to group members whenever you are in need. So, even at 1 AM if you can't sleep and your mind is racing, there is still a place to get support.
  • Great Source of Empathy and Support: People most capable of empathy are those who are going through the same thing and can understand you best. They know what it is like to have epilepsy (or have people in their lives with epilepsy) and can provide support for your journey. Sometimes, even the people closest to us don’t understand what we’re going through and having someone online who does can be lifesaving.
  • A Fairly Safe Way to Express What You’re Feeling: Sometimes, we don’t want to burden our friends and family with our emotions or are unsure on how they will react. Posting online can be a safe way to express your emotions and feelings without this fear and is a great way of getting stuff off your chest.
  • You Can Learn from Others: In my last article on support groups, I mentioned that the biggest thing I took away from them was tips and tricks on living with epilepsy. Epilepsy Facebook Groups are no different and these epilepsy life “hacks” are abundant across them!

The Bad:

  • Trolling: This is nothing new in the online world, and it can happen in Epilepsy Facebook Groups too. The issue here is that you are already emotional when you join the group and the last thing you need is to be picked on, treated with disrespect or have someone take their anger out on you to make themselves feel better.
  • Watching the Suffering of Others: This can be a two-edged sword. On the one hand, it can be helpful to see that you are not alone and that there are others who are going through similar experiences as you. However, on the other hand, it can be painful to see others suffer. A few months after I joined an Epilepsy Facebook Group, I connected with another girl who was living in Eastern Canada and had a fairly similar journey to me. We talked online for a few months until she suddenly stopped responded. I found out a few weeks later that she had passed away. It was heartbreaking and was something that I had not prepared myself for.
  • It Can Be Hard to Develop Close Personal Friendships: Members of Epilepsy Facebook Groups come from all over the world and it can be hard sometimes to find someone to develop a close personal friendship with. However, this can sometimes happen.
  • Misinformation: Sometimes, I cringe when I see some of the advice people give online. It is important to remember that, while you can learn a lot from epilepsy Facebook groups, you should never make any changes to your medications or treatments without first discussing it with your doctor.

So, should you join an Epilepsy Facebook Group? Well, one of my favourite things about Epilepsy Facebook Groups is that they are easy to join and even easier to leave if it’s not the right fit for you. I have left some Epilepsy Facebook Groups and stayed in the ones that I have found beneficial. So, I’d say take the chance and try them!

If you’d like to try out an Epilepsy Facebook Group, just follow these easy steps:

  • Simply navigate to your Facebook News Feed and click “Groups” in the left-hand menu
  • Now, you can easily use the search tab to find groups related to epilepsy
  • Once you find a group you would like to join, click “Join Group” to become a part of that group

I hope you find an Epilepsy Facebook Group to be helpful!

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