The 4 Important Elements to the Right Lichen Sclerosus Support Group

No one support group is created for everyone. Finding the right Lichen Sclerosus support group for you can take trial and error. We hope to give you some food for thought before you jump into the next one to ensure it’s the right fit.

Do you need a lichen sclerosus support group?

We run through many emotions when we’re first diagnosed with Lichen Sclerosus. Many people report feeling shock and disbelief that they have an incurable condition. Others feel frustration because they had to wait so long before getting real answers. Some even blame themselves or wonder if they could have prevented this.

All of these emotions are valid. We all go through them. But no one should have to go through them alone.

A woman supporting another woman's head on her shoulder. Highlighting the importance about finding the right Lichen Sclerosus support group.

For a long time, I struggled unknowingly by myself. The thing about emotional and mental health is that sometimes you may not even know how much you’re suffering because you’re so focused on living. Pretty soon, it starts affecting every part of your life, including the way you behave around the people you love.

That’s where finding a community — a support group — comes in. Support groups give you a safe space to talk to people who know what you’re going through. They can help you work through problems, support you through emotional challenges, and maybe even point out potential issues you haven’t recognized.

Finding The Right Support Group For You

Not all support groups are the same, so you must find the right Lichen Sclerosus support group for you. You want a place where you’ll feel comfortable openly sharing your experiences and receiving feedback from others.

People with vulvas sitting in a circle comforting each other the way we support each other in the Lichen Sclerosus support Network Membership support group.

An excellent first step is asking yourself: What am I hoping to get from a support group? Are you looking for knowledge? Emotional support? Are you trying to make friends? Are you looking for a place to share your problems and feel heard?

Knowing what you want to get out of a support group will help you understand what to look for. If a group doesn’t align with your needs, you may end up feeling more mental and emotional anguish.

4 Elements to Finding the Right Lichen Sclerosus Support Group

If you’re looking for a support group, here are some things to think about:

Group size: Do you want a big group with many people or a more intimate group? Large groups may offer more diverse answers and feedback. Smaller groups may help you form closer bonds.
Beliefs: If science is important to you, you may want an evidence-based group that’s in touch with the latest medical treatments. If you’re uncomfortable with medications, you may seek a group that features home remedies and other forms of wellness.
Privacy: You may benefit from a closed support group if privacy concerns you. These groups may have paid memberships but allow you to share information anonymously or away from the searchable web. Social media groups are easily accessible and a good match if privacy is not an issue for you.
Environment: You’ll never fully know if a support group is right for you until you check it out. Join the group and look around to get a feel of the community. Does it feel comfortable to you? Are the members welcoming and helpful? Is the group active, and will its people be ready to help you when you need the support?

Finding your community may feel overwhelming initially, but it'll be worth it once you find your people. You’ll have others to help you through your LS journey, and you’ll be able to help others, too!

Lichen Sclerosus Support Network Opportunities

As a not-for-profit organization, LSSN offers support for those with LS. Our mission is to inform, educate, and get people with Lichen Sclerosus an early diagnosis.

We currently offer two support groups: LSSN Virtual Meetups and an LSSN Membership.

LSSN Virtual Meetups

If you’re looking for a secure place to video chat with others affected by Lichen Sclerosus, our free bi-weekly meetup would love to have you!

During LSSN Virtual Meetups, we allow everyone to introduce themselves and ask a question. Everyone can answer, share their experiences, and ask follow-up questions. The meetup is completely secure and requires a passcode to enter. We do not record these sessions to ensure your privacy.

Click the following button to sign up for notifications and updates about the next virtual meetup.

LSSN Membership

Finding the right Lichen Sclerosus support group is crucial for your mental health.

Are you interested in a higher level of support? The LSSN Membership might be the right place for you. This group is a private, growing community of people affected by LS. Our membership consists of cohorts to allow for smaller groups and real connections. Members can access ongoing online discussions, and chat groups focused on various topics.

The LSSN Membership also offers extended support by hosting virtual member meetups to discuss LS topics, have Q&A with experts, podcast listening parties, and more. We use a private and secure platform that includes a mobile app, so you can be in touch wherever you are.

You can join monthly or annually and know that your tax-deductible membership is also helping provide LS education for the broader LS community. We also offer sponsored memberships as they become available.

Get more information about the LSSN Membership

You deserve support!

No one should have to navigate lichen sclerosus alone. Whether you choose an online or in-person group, a membership, or a social media group, find a place where you feel comfortable. You deserve a space where you can share your experiences, ask questions and get support from others who know what you’re going through.

We all need help along this journey. Listen to the podcast above to hear about other support groups.

Listen to 4 brave warriors tell their story here.

CategoriesKathy Blog