Finding support and people to lean on can be incredibly important to improving the quality of life for someone with a rare neuroimmune disorder. If you’re newly diagnosed, a care partner, or someone who is just starting to branch out, social media can be a huge help in building that necessary support system.
While it can be a great way to get additional mental and emotional support from others who are going through the same thing you are, the information and people found on social media should not take the place of professional medical advice. When choosing accounts or pages to follow, be sure to vet the information being shared and check their sources.
“Often, we hear from our community members that simply talking with someone who understands their experience makes a big difference. Being able to talk to someone else who just ‘gets it’ is so affirming and encouraging. Having a rare diagnosis means that you might not ever meet someone in your town or city, but thanks to technology, there are ways to meet others and find relationships no matter where you are located. At SRNA, we work to meet our community where they are at and offer support, whether someone prefers to meet online or in person, in a group or one-to-one, on social media or via email, we’re here with the most up-to-date information and support.” – Lydia Dubose, Community Engagement Manager for SRNA
What are the facts? According to the Digital 2022 Global Overview Report, there were 4.62 billion active social media users worldwide at the start of this year. That’s over half the world’s population. The report also noted that this number is a 10.1% rise in users in the last year.
If you’re a parent or caregiver of a child with a rare neuroimmune disorder, there are many statistics and data out there surrounding youth and social media. In a survey conducted by the Rare Youth Revolution and the TREND community, they asked youth participants the following questions: Which social media platforms do you use most to learn and converse about your condition? Which social media platforms do you use to interact with others living with a rare disease? They found that in the 13-17 age group, Facebook and Instagram were their preferred method of communicating. However, they don’t tend to use social media to converse or learn about their condition. With adults, they found that for the 25 and over age group, the leading platforms were still Facebook and Instagram. However, the difference was that the adults were the only group to report that they also interacted with others through blogs.
In December of 2021, TikTok surpassed Google as the world’s most popular web domain. What does this information tell us? It tells us that the social media landscape is changing. If you have a rare neuroimmune disorder or care for someone who does, consider searching for users and videos related to that disorder. Keywords like “#transversemyelitis”, “#ademawareness”, and “#neuromyelitisoptica” are just a few examples of how you can get started.
Facebook is another great way to meet people and build relationships. You can utilize their group feature and search for one that aligns with your interests or disorder. If you don’t see one that moves you, don’t be afraid to start your own! The platform also allows you to search for events, either in your area or online.
Twitter and Instagram both have a great “search hashtag” feature. Similar to TikTok, just search by your interest or disorder and it will pull every available post with the included hashtag. It’s a great way to find and follow accounts relevant to your experiences.
“Social Media Isn’t My Thing”
And it doesn’t have to be! We understand that not everyone is on social media or even wants to be. If social media isn’t your thing, here are some tips for creating a community without hopping on one of the platforms:
- Sign up for newsletters. If you’re a part of an organization or have been trying to keep up with one that you like, consider subscribing to any newsletters or email series they may have! Most organizations include the latest news, resources, and upcoming events in these. This is a great first step to opening the door to a new community. If you change your mind, you can always click that unsubscribe button.
- Attend an in-person or virtual event. Nothing beats connecting face to face. Take advantage of the internet and see what events might interest you. If you can’t attend in person, try joining a virtual one! You never know who you’re going to meet. You can view our upcoming events here.
- Start a group chat. Maybe you’ve already met some people you’d like to keep connected with. Starting a group chat to encourage conversation, exchange advice, and offer support is another great way to help build community without being on social media. One app that is known for its great group chats is WhatsApp.
- Sign up for our Peer Connect Program. If you’d like to start with connecting 1:1 with someone, our Peer Connect Program is perfect for you.