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The Paralyzing Strength of Fear When You Have Lichen Sclerosus

The Paralyzing Strength of Fear When You Have Lichen Sclerosus

Introduction

My last blog post focused on Lichen Sclerosus and mental health; I discussed grief and the multitude of complex ways it can impact your life when processing a Lichen Sclerosus diagnosis. You can read about it here. Writing this piece motivated me to create The Grief Project, a new addition to The Lichen Sclerosus Blog, where other LS warriors share their Lichen Sclerosus story and their experiences with grief. You can learn more about the grief project and how you can share your story at the end of this post. Keeping with the theme of Lichen Sclerosus and mental health, I’m going to talk about fear and Lichen Sclerosus. Much like grief, there are a number of fears associated with a Lichen Sclerosus diagnosis.

In this post, I highlight some of the fears you may experience. I end with a call to normalize having these fears and all of the emotions we feel. In my next post, I provide practical suggestions for managing your fears with Lichen Sclerosus. Importantly, this advice is given in a way that doesn't invalidate or attempt to completely eliminate how you feel.

Lichen Sclerosus and Fear Surrounding Relationships

Whether you are currently in (a) relationship(s) or not, getting diagnosed with Lichen Sclerosus can create a lot of fear about the future of your relationship(s) (or potential ones).

For example, if you aren’t in a relationship, you may be fearful about whether anyone will want to be in a relationship with you. You may think to yourself, “Who would want to date someone with this disease? I’m too much work.”

Or, you may be in a relationship and fear how your diagnosis will impact the future of your relationship.

Image of a person with long black hair on the phone. They look dismayed and tense. To the left of them is a blurry image of their partner, expressionless and fading in the background. This image represents the fear have that their relationship(s) or future relationship(s) may be bleak because of their Lichen Sclerosus diagnosis.

Fear about Having Sex with Lichen Sclerosus

When we receive our Lichen Sclerosus diagnosis, many of us aren’t told much about what Lichen Sclerosus is. Specifically, we aren't told what causes Lichen Sclerosus and the details of our treatment protocol. Most of us do not receive any advice about sex with Lichen Sclerosus other than, “it will probably be painful for you,” (thanks, I didn’t know that, that’s super helpful *cue sarcasm*). This leads most of us to turn to Google to find some answers

Image of a laptop on a wooden table with the main Google search engine page open with a couple pens on the side. This image represents how many of us with Lichen Sclerosus turn to Google because our doctors don't provide us with enough information. This consequently, often leads to a lot of fear because we see a lot of horror stories on the internet.

However, giving into googling symptoms doesn’t always ease our fears, if anything, it only worsens them because we end up being exposed to an abundance of horror stories and worst-case scenarios about living with Lichen Sclerosus.

In my case, when I first started digging around support groups, medical papers, Google images, etc., I became absolutely paralyzed by fear. I immediately assumed my sex life was over. “There’s absolutely no way I will ever be able to have penetrative sex with Lichen Sclerosus”, I thought.

Thus, whether you are in a relationship or not, you may have fears about what a Lichen Sclerosus diagnosis means for the future of your sex life. You may have read that people with Lichen Sclerosus are prone to tearing during sex. This can lead to a fear of tearing during sex or injuring yourself by having sex.

Sidenote: if you need some good news, I am now able to have pain-free, penetrative sex (yay!). In fact, it’s actually the best sex of my life! It was important for me to get the inflammation under control and address my underlying vaginismus and vestibulodynia.

Fear of the Unknown

Another fear you can experience after getting diagnosed with Lichen Sclerosus is a more abstract fear – fear of the unknown. Fear is particularly gripping when you don’t fully understand what you are scared of. If you were diagnosed with Lichen Sclerosus but weren’t provided with substantial education and guided towards a support group, you likely do not know very much about living with a managing Lichen Sclerosus. That not knowing, all those what-ifs, only feed into the fear.

“What does my future hold now?”
“Is my life over?”
“Will the pain ever stop?”
How fast will this disease progress?”

These are all valid questions that can come up, especially in the beginning, even more so if you do not have substantial education managing and living with Lichen Sclerosus.

Image of a road stretching out into the horizon. The words "Unknown" are sprawled out in the middle of the road in big blocky white letters. There is a blue sky with a sun and some clouds above. This image represents the fear of the unknown.

Fear of Developing Vulvar Cancer

Another super valid fear is the fear of developing cancer. If your experience was anything like mine, you were told you have Lichen Sclerosus, that it’s an autoimmune disease, and there might be a genetic component to it. You were then given a tiny RX paper for Clobetasol. Likely, this was followed by a passing, “oh, by the way, this puts you at an increased risk for developing vulvar cancer”. Afterward, you were likely sent off to the front desk to check out.

It is absolutely normal to feel a deep and almost paralyzing fear when you are told this, especially when the risk of vulvar cancer after a Lichen Sclerosus diagnosis without any context (i.e., what is the percentage associated with the increased risk? and what can you do to mitigate this risk?) Many of us live with this fear for months, alone and without support.

Remember, this post is meant solely to highlight the different types of fears you can experience after a Lichen Sclerosus diagnosis. That being said, with proper education context and community, the power and strength of these fears can diminish. In my follow-up post, I will provide education, context, and practical steps to help work with your fears and Lichen Sclerosus.

Your Fears are NORMAL

Before wrapping up, I want to tell you your fear(s) are normal. I was told for months that I was just too sensitive, I wasn’t dying, and I needed to be positive and lift my chin up. However, I do not want you to internalize any of that, because the truth is, you aren’t being overly sensitive. You are allowed to feel your feelings, no matter how scary or uncomfortable they are; you don’t have to be sunshine and rainbows every day. This disease is relentless, and the physical symptoms can be mild to severe or even debilitating. You have every right to feel how you feel and it is a normal part of processing your Lichen Sclerosus diagnosis and working towards acceptance.

Image of mutli-colored (orange, yellow, red, green, and blue) text reading "It's OK not to be okay" amongst a white background that looks like it's been scrapped away on top of a grey background.

Conclusion

In sum, there are so many different kinds of fears you may experience in your journey with Lichen Sclerosus. There are many fears I didn’t even get to touch on in this post, and I want you to know any fear(s) you may have are completely valid. You aren’t too much; you aren’t too sensitive. While there can be a lot of fear around Lichen Sclerosus, I want you to know there is still hope. There are methods and tools you can use to help dim the lights on the bright spotlight of fear shining down on you. I will share these in my next post. Be sure to subscribe to the blog here so you don't miss it!

The Grief Project

The Grief Project is a collection of voices from people with Lichen Sclerosus sharing their experiences and journey with grief. The purpose of this project is threefold. First, the goal is to create a space for others to safely share their experience with grief. Second, my hope is writing will be therapeutic, cathartic, and provide you with some important insights about yourself. Third, the purpose of The Grief Project is to normalize these types of discussions about Lichen Sclerosus and mental health.

Image of a woman lying down on a mat writing on the top left corner. The background is orange with yellow circular details in the corners. The text in the center reads The Grief Project by The Lost Labia Chronicles.

You can contribute in a number of ways such as:

A)      Writing your own piece and choosing your own images.

B)      Writing your own piece but have me choose the images.

C)      Doing a virtual interview with me and I write out the interview and you choose pictures you’d like.

D)      Doing a virtual interview with me and I write out the interview and I’d choose the pictures.

If you would like to contribute, please reach out to me via one of the options below.

Reach out to Me

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: lostlabiachronicles@gmail.com

YouTube: The Lost Labia Chronicles

#TLLCTuesdayTip: Remember that any fears, worries, concerns you may have are completely valid. Don’t let anyone tell you otherwise. Until you receive this diagnosis and live with the physical symptoms, you cannot know how scary and distressing it can be. Know that you are not alone in your fear.

Virtual Meetups

Do you want more support in your journey with Lichen Sclerosus? Consider joining our Lichen Sclerosus Support Virtual Meetups. We meet bi-weekly, every other Saturday from 2-4 and 7-9 pm EST. These meetups are a safe space for you to share your story, cry, celebrate, vent, ask questions, and be a part of a community of support. Click the button below to sign up!

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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