Support Systems

In January 2024, it will be 4 years since being officially diagnosed and starting my idiopathic hypersomnia advocacy journey.

When I started doing my advocacy work, I felt alone and didn't know anyone who had narcolepsy. I was worried that I wouldn't find anyone who understood what I was going through. Thankfully, my friends were supportive of my diagnosis, but it was still a different experience from talking with people who also shared my condition.

Finding narcolepsy support in person and online

Currently, I use a variety of support systems to feel supported and validated about my idiopathic hypersomnia. It also gives me a variety of people to chat with about my struggles or to share advocacy experiences/journeys.

Here are some of the different types of support systems I use.

In-person support

For in-person support systems, I mainly converse with my closest friends — people who've been my friends since high school — about what I'm going through. Having people who have followed my diagnosis journey from the very beginning makes them more understanding than most friends!

Personally, I recommend people find other disabled people to communicate with even if they don't have the same diagnosis. While they can't relate to my sleep problems, other disabled people can relate to other issues that we both go through, such as medication issues, doctor troubles, and advocacy.

Online support

People tend to forget that you can meet people with idiopathic hypersomnia online! At first, I didn't know anyone with narcolepsy or idiopathic hypersomnia; then, after going online, I met people all over the world!

It's also fun to compare how different or similar we are in terms of time to diagnosis or treatment. Personally, I believe that making online friends is worth as much as creating in-person friends! I know a bunch of people with narcolepsy due to being prolific in a bunch of online communities.

The power of social media, apps, and forums

Here are some social media sites that I use and how I use them.

On Discord, I interact with a bunch of people in sleep disorder communities. Facebook is similar to Discord in that it has small bubbles of private groups to join that have people with idiopathic hypersomnia or narcolepsy. While on Reddit, I can look for answers and ask questions and see if anyone has dealt with similar issues that I have gone through.

On Twitter (now X), I rant or post blurbs about what I'm going through, and people comment on my posts. I also started my advocacy journey on Twitter, so I have a soft spot for it even though it's pretty much dying.

Lastly, Tumblr is pretty similar to how Twitter works, but I believe it has a younger population. I don't post as much as I would want to on Tumblr due to having so many other social media platforms to keep tabs on. But, considering that I started my internet career on Tumblr, I have a similar soft spot for it like Twitter. So, I try to check tags such as #sleepdisorder or #narcolepsy from time to time.

Finding support on Narcolepsy.Sleep-Disorders.net

I also like to look at what people are talking about on the Narcolepsy.Sleep-Disorders.net forums and comment if I relate or have an experience I can share with someone.

Do you have a preferred social media platform for advocacy or connecting with others? Do you prefer in-person connections or online communities? Share an experience in the comments below!