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How to keep your quality of life with Lichen Sclerosus

How to keep your quality of life with Lichen Sclerosus

Introduction

Hey, welcome. I’m so glad you are here with me at Lichen Sclerosus Podcast. In this episode, I decided to take a little break from the interviews, and just speak from my heart. That is, I want to talk about not letting Lichen Sclerosus control your quality of life; not letting it rob you of who you are or the way you want to live. 

Lichen Sclerosus Support Network – A Huge Thank You To Our Sponsor!

Before we jump into today’s episode, however, I want to thank our sponsor, Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping get people diagnosed earlier and get the treatment and care they deserve.

Be sure to follow them on IG and FB @lichensclerosussupportnetwork.

LSSN logo, a teal heart and white letters reading LSSN through the heart with a purple background.

The Ways in Which It Can Feel Like Lichen Sclerosus Controls Your Life

During our last virtual meetup (get information on the meetups and how to join at HERE), something came up in both the afternoon and evening sessions. Multiple individuals expressed they felt they had to stop doing things now that they had Lichen Sclerosus.

Many of us have heard from others that if you have Lichen Sclerosus, you cannot wear tight pants or sexy lingerie, you cannot swim, exercise, have pain-free sex, etc. This really can make you feel like Lichen Sclerosus completely controls your quality of life.

This control can make us feel like we are being robbed of fundamental parts of who we are.

Lichen Sclerosus, Control, and Tight/Sexy Clothing

Image of a person in a tight, little black dress.

For example, one lady during the meetup said after her Lichen Sclerosus diagnosis, she had packed up her pants and was going to donate them all. Her thought process is that if you have Lichen Sclerosus, you cannot wear pants unless they are super loose.

Now, this may not seem like a big deal, but fashion plays a key role in our identity (or it does for many of us). Thus, getting rid of a large part of your wardrobe is implicitly like getting rid of a part of your identity. And this can be hard.

This may be something you need to grieve and work through. If you’re struggling with grief, be sure to check out The Grief Project by The Lost Labia Chronicles HERE. Grief changes your quality of life.

Lichen Sclerosus, Control, and Grooming

During this session, we were discussing the latest episode of Lichen Sclerosus Podcast with Dr. Cyn on grooming (listen here if you haven’t heard it yet). At this point, someone chimed in saying she was surprised to hear it was safe to remove hair with Lichen Sclerosus.

She had stopped grooming because she didn’t think it was possible with Lichen Sclerosus. Another individual was shocked to hear a doctor say that it’s OK to use fragranced soap (as long as you don’t react poorly to it).

So many of us are out here letting Lichen Sclerosus dictate what we do to and use on our bodies.

How we groom and our beauty products bring us joy and improve our quality of life through self-esteem. Don't let LS take that from you.

Lichen Sclerosus, Control, and Diet

Another example of ways Lichen Sclerosus can control your quality of life is through diet.

There are people all over the internet telling you not to eat refined sugar, cut out all dairy, scrap gluten, don’t eat broccoli, etc. There are numerous diets claiming to heal your LS such as low oxalate, carnivore, keto, intermittent fasting, etc.

And the thing is, Lichen Sclerosus is an individualized disease, accordingly, your nutrition should be individualized too. Just because one person can’t eat corn doesn’t mean you have to get rid of corn too.

Find what works for you! Know that an LS diagnosis doesn’t mean you have to stop eating all of the things that bring you joy and pleasure.

Your joy and pleasure matter.

Image of cupcakes with blue frosting on top.

If you aren’t sure whether a food is causing you to flare, consider tracking your symptoms with my FREE symptom tracker here.

Become an investigator and expert in your own body.

Just because someone in a support group tells you you can’t do something, doesn’t mean you can’t. It may be a trigger for them, but not for you.

Don’t Let Lichen Sclerosus Control Your Quality of Life

At this point, I was on my soapbox about not letting Lichen Sclerosus control your quality of life.

We are all different.

Some people cannot wear tight clothing, but others can. Some people can use fragranced soap, others cannot.

But just because you cannot at this moment, doesn’t mean this is a life sentence. You may be able to wear the clothing months down the line.

Do not rearrange the way you live for Lichen Sclerosus. Have faith you will manage this disease and regain control of your life.

Let the LS Warriors Help You If You Are Struggling With Control

This is a theme that we work on together, as a family and community, in the LS Warriors.

In the LS warriors, we share our lived experiences and support others through the difficult journey of moving away from letting LS control their lives, to living more freely and authentically.

We have so many success stories of LS Warriors that are living their best lives, and you can too! 

Image of a group of folks standing in a circle holding hands to represent the community I built, the LS Warriors.

So you may not be able to wear tight pants for a whole day, but maybe you can wear them on a date, or to the store. And this may ebb and flow throughout your journey, but this doesn’t you have to chip away at your identity each time you flare or hit a roadblock.

Don’t give LS the power to take away your life. Don’t let Lichen Sclerosus control your quality of life. 

And if you are struggling with this, come and try out the LS Warriors. We will be there to help you through this process.

Conclusion

Remember that your needs, triggers, etc., will change throughout life. Just because you can’t do something now, doesn’t mean you can’t forever.

So please, do not let LS control your life. Do not let LS steal your joy, your shine, and your spirit. 

Virtual Meetup Information

Have you changed your life around your Lichen Sclerosus diagnosis?

Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.

Better yet, why don't you tell us at our Lichen Sclerosus Support Virtual Meetup!

We meet every other Saturday from 2-4 pm and/or 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask a question to the group. Perhaps share your experience with appointment anxiety! I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community. 

Sign up at lssupport.net/connect for notifications and updates! I cannot wait to meet you.

Lichen Sclerosus Support Virtual Meetup

LS Warriors

Are you interested in joining a community of LS warriors dedicated to lifting each other up and helping each other thrive and live their best lives? LS Warriors is the place for you.

We have Monday-Wednesday-Friday check-ins, vulva check accountability posts, mental health workshops and events, access to all listening parties, events, and interviews recorded in the past. It's a safe space to show up as your authentic self.

If you need support, we are there. If you need to cry, we will cry with you. If you want to celebrate, we will celebrate with you.

Get your first-month free trial now!

Join LS Warriors

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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