3 Support Resources for Teens with Lyme Disease
By E. Zoe Angelo
Dealing with a chronic illness such as Lyme can make you feel isolated and lonely, especially for teens needing more social interaction. There are several good ways to connect with others, particularly those who understand what you’re going through. Here’s a list of some good support options, whether you’re looking to talk about shared experiences or just make new friends.
Support Resources for Teenagers with Lyme Disease
1. Join a Lyme Disease Support Group
You aren’t alone in what you’ve experienced and how Lyme disease impacts your day-to-day life. A good way to connect with others in your community with shared experiences who understand what it’s like to have Lyme is to join a support group hosted by a Lyme support organization. During support meetings, patients can discuss topics related to Lyme disease and how they manage their symptoms day-to-day, as well as other subjects. These meetings are a great way to make new acquaintances you connect well with. Here are some places to start:
Illinois Lyme Association
Illinois Lyme Association (ILA) is a nonprofit organization that works towards making Lyme information and care more accessible to people in Illinois. ILA hosts virtual and in-person meetings as well as offer referrals and access to other groups or medical professionals. Past virtual patient meetings are recorded and can be accessed with a patient password if you miss an event.
LymeDisease.org
LymeDisease.org is a nonprofit organization that provides background information, physician data, and current news for Lyme disease patients. Members can access patient portals and sign up for virtual support group meetings and newsletters about recent Lyme updates. Membership starts at $50 per year and includes member resources like the patient portal, access to archived newsletters and upcoming newsletters during the payment period, and a physician directory.
Generation Lyme
Generation Lyme, also known as GenLyme, is a nonprofit organization dedicated to building a community that empowers people with Lyme disease. The organization aims to create a safe space for patients, loved ones, and supporters to share their experiences. Generation Lyme hosts several virtual meetings each week, which are free to attend no matter how Lyme and other tick-borne diseases have affected your health.
2. Join Social Media Lyme Disease Discussions
Joining online groups to discuss Lyme disease can connect you to others who understand the impacts of chronic illness. Many online groups do not require membership and are available to either patients or those hoping to learn more and support friends, family, or the community as a whole. It is important to note that while many of these environments are moderated and friendly, you should always be cautious when sharing information online with people you aren’t familiar with, particularly on mostly anonymous platforms such as Reddit or Discord.
Lyme Disease Facebook Groups
Facebook offers the opportunity for users to create and share groups based on a particular discussion topic. Joining a Lyme disease-centered Facebook group can help you connect to other patients or can help you to share information and awareness about Lyme or chronic illness. Communicating with friends, family members, and others online through familiar platforms is a fun and easy way for teens to connect with community members.
Lyme Disease Discord Servers*
Discord servers are online groups connected to the Discord chat platform, typically used for gaming. Disboard is a resource that allows Discord users to search for particular servers they would like to join around topics that interest them or filter out content they don’t want to interact with. If you can’t find a group that interests you or fits the style you are interested in, creating a Discord server is free and simple.
Promoting your group on websites like Disboard shares your server so that others see it when searching for key terms like “Lyme” when using the website. If you’d like to communicate anonymously or make new friends outside your community, using Discord and associated moderation bots is a safe way to interact with others.
The r/Lyme Subreddit*
While Reddit is mostly used to share images and memes, some subsections of the website, called "subreddits," can be helpful resources if you know where to look for them. By filtering out content you don't want to see before exploring a Subreddit, you can have a pleasant and, in some cases, informational experience interacting with other patients. If you're looking for a space to share jokes, relatable memes and messages, or discuss day-to-day struggles, Reddit may be an option for some to do so.
Utilizing Hashtags
Hashtags are a feature of most modern social media platforms. They’re used to categorize user-generated content and share it with others the algorithm determines might be interested in seeing it. Platforms like TikTok, Facebook, Twitter, and Instagram implement specialized hashtags, and many of them allow you to follow specific hashtags as a way of ensuring the content under them appears on your feed. Some hashtags commonly utilized in the Lyme community include: #lymewarrior, #lymedisease, #lymelife, #chronicillness, #invisibleillness, #butyoudontlooksick, #ticks, and #tickssuck. Following these hashtags or adding them under your content is a good way to connect with others who have Lyme or have been impacted by it.
3. Create a Community of Your Own
While the options above offer a variety of methods to connect to those with similar experiences or learn more about Lyme disease, sometimes you can’t find what you’re looking for in a pre-existing community. In this case, creating your own group is often a good way to get started. Using an online platform to spread the news or sharing information with others near you are both excellent ways to get the word out about a new resource for patients like you.
Create a Facebook Group
If you're already familiar with Facebook's layout and algorithms and have connections to friends and family on Facebook-owned platforms, creating a new Facebook group is a good way to inform others you already know about Lyme disease or to share related resources with those in your community who have Lyme or would like to learn more about it. Using features like the "public" or "private" settings can help configure the group to your needs and allow you to determine if you'd like group members to be limited or if you'd like it to be visible and available for anyone to join.
Conclusion
You can connect to others with similar experiences relating to Lyme in several ways, whether that's to learn more, spread awareness, or just make new friends and have fun. Whether you'd like to interact with others in-person or virtually or just like to be kept up to date with news in the Lyme community, there are plenty of options. The list is by no means exhaustive, and if you can't find an option that speaks to you, there are many more to be explored.
Note: It is important to be cautious on social media platforms, especially around users you do not know or when interacting with new systems you aren’t familiar with. The above resources marked with * symbols are those which require more caution or preparedness due to the anonymous user layout or the potential for unfiltered content.
