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Grief: The Forgotten Feeling of Living with Lichen Sclerosus

Grief: The Forgotten Feeling of Living with Lichen Sclerosus

Introduction

In my last blog post, I wrote about dealing with anger and frustration with Lichen Sclerosus. Specifically, I wrote about the anger and frustration many of us feel when we realize how much of our lives need to be modified because of restrictions placed on us by our disease (read about this here). Today, I want to touch on another aspect of mental health that often accompanies living with Lichen Sclerosus: that is, grief. Grief is a multifaceted feeling and can present itself in several different ways. In this post, I will discuss how grief can manifest and why grief is normal when you have Lichen Sclerosus.

Disclaimer on the Nature of Grief and Lichen Sclerosus

First and foremost, I want to note Lichen Sclerosus is a highly individualized disease. Therefore, people with LS can have different physical symptoms. Further, they may react differently to treatments, and/or process their emotions differently, which is completely OK.

Thus, if the ways I discuss grief do not resonate with you, this doesn’t mean your experiences with LS are not valid. If some parts resonate and others do not, that is also OK. We are all different and do not always experience things similarly. If this really resonates with you, know you are not alone in your grief and your struggles.

Grief and Anatomy: The Irony of Grieving Something You Never Fully Knew

Grief played a huge role in the earlier stages of my Lichen Sclerosus journey; however, my experience with grief was a little peculiar.

If you read my blog on avoidance (link here), you know I never really looked at my vulva prior to getting diagnosed with Lichen Sclerosus. After being misdiagnosed and dismissed for over a decade, I was finally diagnosed by my general physician (read my diagnosis story here). However, by the time I was diagnosed, I was already experiencing severe symptoms. For example, when my GP examined me, she noted vulvar discoloration, clitoral phimosis, and severe fusing of my labia.

Image of a person in bed, hugging their legs with their head curled on top of their knees. This images expresses the feelings of grief.

The Mental Distress of Changes to Your Anatomy

Once I learned about the scarring/fusing and discoloration, I became obsessed with checking my vulva. Read about my experience with compulsive checking here and here.

When I finally mustered the strength to look at myself, I saw the changes with my own eyes. However, this caused significant mental distress when I began comparing my vulva to images of other vulvas I found online. More specifically, seeing images of vulvas with intact/unfused labia minora brought up negative feelings and made me feel less than.

Now, some of you may be thinking, “don’t all vulvas have labia minora?”

Yes, they do; however, for individuals with Lichen Sclerosus, the disease can progress and cause fusing of the labia.

Furthermore, the fusing can progress to complete resorption of the labia. Resorption is when the tissue of one part (i.e., the labia minora) reabsorbs into a different part (i.e., the labia majora), meaning the former becomes one with the latter This is the case for me and why I say my labia are lost (hence my calling this blog The Lost Labia Chronicles)!

Image of a person opening a citrus fruit, which often stands in as a representation of a vulva.

A Particular Kind of Grief

After seeing countless images of vulvas without fusing and resorption, I found myself feeling grief. This grief, however, was different, from what I was used to. In this case, I was grieving something I never really knew or had a strong connection to. I never really looked at my vulva before getting diagnosed with Lichen Sclerosus, so I do not have much recollection of what my labia looked like prior to my anatomical changes.

Aside from describing myself as small, I wouldn’t have been able to be more descriptive about my vulva.

 How can you grieve something you never knew?

Image of a person shedding some tears, representing the tears of grief I and many of us feel with our Lichen Sclerosus.

You would think my grief would be more manageable since I never really looked at or connected with this part of my body; yet, it was.

For some time, I found myself grieving an obscure, false memory of the labia I once had. I felt grief for what I assumed was once there, as well as grief for the opportunity to have healthy labia and anatomy.

Additionally, I continuously wondered if my labia would still be here had medical professionals taken my symptoms seriously. I felt grief for the loss of a part of me I would never get to know.

Grief and Anatomy: Grieving Something You Knew Intimately

On the other hand, you may have memories of what your vulvar anatomy looked like prior to Lichen Sclerosus and you may feel grief over your lost/altered anatomy. You may have had an intimate connection with your vulva, liked its aesthetic, felt its sensual energy, etc. Yet now, as your body changes, it may feel like you are losing a big sense of your identity along with the physical loss – especially since you felt such an intimate connection to it in the first place.

Grief and Relationships

Your grief, however, is not necessarily limited to your anatomy. It can bleed over into other facets of your life, such as your relationships.

Image of a couple in the midst of an argument, representing how some relationships struggle with an LS diagnosis.

For example, many relationships become strained, experience tension, and sometimes end due to LS. In those cases, you may also find yourself grieving a relationship you once had. Similarly, you may find yourself grieving the ‘old you’ in relationships before Lichen Sclerosus started to impact your mental health and sexual function.  On the other hand, perhaps you may be in a loving and supportive relationship but you are still grieving the way in which you used to be able to have spontaneous sex with your partner. There are numerous ways grief can impact our relationships; so remember, you aren’t alone in feeling this way.

Lifestyle, Hobbies, and Activities

Another way grief may factor into your life is through the loss of hobbies and other activities that once brought you joy but you can no longer partake in due to LS. For example, you may have been an avid horseback rider or cyclist and currently find those activities cause you too much physical pain to continue doing them.

Similarly, you may grieve because you are only able to pursue your hobbies and passions with modifications, something you may not have had to do before you became an LS Warrior.

Image of a person running. This image represents the grief some feel when they consider certain activities they used to love doing but now feel they can't because of Lichen Sclerosus.

Conclusion

To conclude, I highlighted a few ways in which you may experience grief when living with and processing your Lichen Sclerosus diagnosis. For example, you may grieve a part of your anatomy that was lost or altered, the loss of a relationship, and certain activities.

I want you to know if you experience any type of grief with respect to your Lichen Sclerosus, your grief is normal and valid.

Add Your Voice – Reach Out to Me

In order to normalize discussions about grief and Lichen Sclerosus, please feel free to share your experience with grief on the blog. Email me your story and photos and I will post them as a guest blog piece. Conversely, I can do a virtual interview with you and then write out a post. This can be anonymous or not; whatever makes you feel comfortable.

You can contact me in the following ways:

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: lostlabiachronicles@gmail.com or lostlabia@lssupport.net

#TLLCTuesdayTip: Remember that any grief you feel is completely normal. And, like all grief, it must run its own course. Do not feel this is something you need to simply get over and move past from quickly. Try journaling or dance therapy as a way to deal with and process your grief.

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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