Hey, beautiful soul. It’s Jaclyn from The Lost Labia Chronicles in partnership with Lichen Sclerosus Support Network (LSSN). Yup! If you follow me on social media (@thelostlabiachronicles) or are on my newsletter, you already know that I have partnered with LSSN to help reach more people with lichen sclerosus content and education. My goal in creating TLLC was always to help support folks in their LS journey by providing evidence-based information and to help folks with LS feel heard and supported. I was a one-woman team from 2021-2022.
However, I believe in joining forces with other powerful LS warriors in the LS community, we can reach even more people and have a deeper impact. Thus, I have partnered up with LSSN and will be creating content on LSSN’s website. This way folks with LS don’t have to go through multiple websites to find information and support resources; everything you need to find will be under one website now!
For my first official post for LSSN, I wanted to discuss the importance of being heard. This is a post from the heart. It is based on lived experience and anecdotes. It is a topic that I see recurring time and time again in LS support groups (support groups listed at the end of this post), but something that isn’t discussed much in the medical community.
Healing and LS: Why It's About More Than Just Steroids
Let’s talk about healing and lichen sclerosus. For many of us, when we think about healing our lichen sclerosus we think about treatment; and this is super fair. For folks who are suffering from itch and pain, it is natural that treatment would be the first thought that comes to mind when asked about healing and LS.
Treatment is, of course, a fundamental part of living with lichen sclerosus. Following your treatment plan (e.g., topical corticosteroids or calcineurin inhibitors) is crucial for reducing inflammation, slowing the progression of the disease, and reducing the likelihood of developing vulvar cancer (in the case of steroids). Check out the video below to learn more about these two treatments.
But there is more to healing than just healing the skin. Lichen sclerosus doesn’t just affect our physical health; it affects our mental health as well. There is a lot of healing that also needs to take place with respect to our mental health.
How Lichen Sclerosus Can Affect Mental Health
Living undiagnosed with lichen sclerosus for years can lead some folks to experience feelings of frustration, hopelessness, agitation, depression, anxiety, and isolation. Processing a lichen sclerosus diagnosis can involve depression, anxiety, anger, grief, and more. Many folks with vulvar lichen sclerosus feel ashamed and embarrassed about their condition, and, therefore, keep their feelings balled up inside of them.
However, this takes its toll on our mental health and can start to wear us down. I believe part of the antidote to the pain of holding it all inside is to feel heard.
Dismissal and Feeling Unheard at the Doctor’s Office
When I was diagnosed with LS, my doctor very quickly informed me LS is an autoimmune condition, that it’s manageable but must be treated for life, and to use the prescription she sent to my pharmacy daily. That was it.
My experience seems to be quite common. At support groups, I often hear folks saying their doctor said it’s manageable and made it seem like no big deal. Before the patient could even vocalize their thoughts, the doctor walked out the door.
This interaction results in many of us leaving our doctor’s offices feeling invalidated and unheard. The conversation wasn’t safe and supportive; instead, it felt dismissive and hand-wavy.
Feeling Unheard by Friends and Family
Some folks choose to share their diagnosis with friends and family. However, this doesn’t always have the healing effect we would want. For example, I know a lot of folks who told a friend or family member about their LS only to hear, “oh yeah, well I get yeast infections too, and it’s not that bad, at least you aren’t dying”. Of course, while some of them might mean well by these types of comments, they can make us feel massively unheard and invalidated. It can make us feel small, insignificant, and worthless. It’s not a great feeling.
The Importance of Feeling Heard
This is unfortunate because feeling heard is healing. There is a healing power in feeling truly seen and heard as your authentic self. Having your emotions, thoughts, and feelings validated by someone else; it can be magic for some. For some, it gives them permission to truly sink into and feel their feelings, which is also crucial for healing.
With that, I want to share an impactful quote by Dr. Michael P. Nichols, 1995.
“Few aspects of human experience are as powerful as the yearning to be understood. When we think someone listens, we believe we are taken seriously, that our ideas and feelings are acknowledged, and that we have something to share. A listener’s empathy, which is an understanding of what we are trying to say and showing it, builds a bond linking us to someone who seems to understand and care, thus confirming that our feelings are recognizable and legitimate.”Nichols, 1995.
Feeling heard is transformational and I think it’s an important piece of one’s healing journey with lichen sclerosus and mental health.
Different Ways to Feel Heard
Good healthcare providers will actively listen to you and validate your emotions. For example, if you start to cry after your diagnosis, they might encourage you to cry and say it’s OK to feel your emotions while handing you tissues. They may follow up and say that it can be a lot to process in the beginning, but there is hope. Additionally, they may offer mental health resources to help support you. They will not compare you to their other patients because they know each patient is unique and going through their own stuff.
Friends and Family
A good friend or family member will also actively listen to you and validate your emotions. They will not respond with things like, “it could be worse”, but instead say things like, “that sounds awful. I’m so sorry you had to suffer alone like this. Thank you for sharing this with me. What can I do to help better support you on your journey”.
If you are looking for ways to approach friends and family but aren’t sure how, be sure to subscribe to my newsletter as I will be launching a couple of eBooks on this topic this year.
A great way to feel seen and heard is to join a lichen sclerosus support group. Why? The folks in the support groups also have lichen sclerosus, so they know first-hand about the physical, sexual, and mental health struggles that come with having LS. They are way less likely to invalidate your feelings. Instead, it’s the opposite. Folks in support groups show up with genuine empathy, compassion, and tenderness for others in the group. They make space for your wins and for your struggles. They validate your pain and emotions, which can help you feel more whole. For many, this is where healing can really start. It starts by feeling heard; by feeling held compassionately by others. (See the end of this post for support groups).
Joining the Lichen Sclerosus Virtual Meetups back in 2020 was definitely pivotal to my healing journey. After the session, I sobbed my eyes out. For the first time in over a decade, I felt truly seen and heard. I didn’t feel alone. There was a beautiful community out there ready to embrace me (and others), regardless of where they were in their journey, and that was magical. I will always be grateful to Kathy from LSP for spearheading those.
Here is a podcast episode you may enjoy.
Be sure to subscribe to our newsletter as Kathy is publishing a piece on support groups on January 10th!
In sum, lichen sclerosus doesn’t just affect our physical health. It also affects our mental health. When we talk about healing, it’s important to consider both. Feeling heard can be a huge piece towards healing the mental health pieces of living with LS.
FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.
LSSN Membership – sign up here.
If you are struggling with grief and emotions, feel free to book a 1:1 call with me.
For a more detailed list of free and paid support resources, check out my LS resources page here.
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Why Listening Is So Important Some material excerpted from The Lost Art of Listening by Michael P.Nichols, Ph.D., The Guilford Press, 1995