I decided to create the Grief Project back in June 2021. I wanted to create a space for people with Lichen Sclerosus to openly write about and share their experiences with grief. This is a topic we do not hear much about, but it is something that touches almost everyone with Lichen Sclerosus in some capacity or another. I wanted this to be a part of The Lost Labia Chronicles, but make it a separate project to truly give space to others to share their stories.
I opened up a call on my social media and to the folks in the LS Warriors membership to share their experiences with grief and contribute to this collection of voices. If you want to contribute to the project, please reach out to me (my contact information is at the end of this).
Without further ado, let me introduce you to Paulina, a beautiful soul living in Germany. Paulina has been a part of the Lichen Sclerosus Support Virtual Meetups for quite a while now, and also speaks with such strength, asks wonderful questions, and gives great support to others. Thus, I will now turn the metaphorical floor over to her.
Paulina’s Journey of Grief and Lichen Sclerosus
When the wonderful host of this blog, Jaclyn, first asked for pieces sharing about grief about LS I questioned whether I was someone fit for the task, as my diagnosis is still very recent and I am nowhere on the other side of grief. But since then I have learned that grief is a process, and not to be ashamed of still being in that process, maybe for a long
time. I feel that in regards to lichen sclerosus it is important not to look at the disease's physical impact. As it mainly affects the genitals, so for me the vulva, it is also touching upon the very center of my “womanhood” and sexuality. And as a young woman like me ( or probably anyone who shares this diagnosis) the mental aspects can be tremendous. So I feel like it is kind of a duty of mine to speak out on the mental toll that this diagnosis can have on the patients – in this context in the form of grief.
Mental Health Background
As I write of my experience with grief I feel it necessary to first disclose that I am and have been struggling with mental illnesses for almost half of my life now. And as a reaction to my diagnosis earlier this year my brain has decided to shut off any emotional responses. So as I am writing about my grief, I am not currently experiencing it but can share about what it was like and what I know it will be like, as soon as I get back in touch with my emotions.
What Grief Feels Like to Me
The “best” way to describe my grief is a weighted grey blanket. Resting not only on my shoulders but what feels like my whole life – my entire existence. That blanket was thrown onto me out of the blue when I was (from my knowledge at that point) surprisingly diagnosed with the devastating disease that is Lichen sclerosus. With it came the feeling of a hand literally squeezing my heart.
A feeling like it had stopped beating, like life was sort of squeezed out of me right then and there. When trying to put it into words I can feel that hand squeezing, trying to get to what is left of me. Taking away any joy or lightness. That is where I am or was before my brain put me out of touch with my emotions.
Grieving my Past
As I came to learn about the disease and its symptoms, I made many connections to situations I had been in in the past. As LS is chronically underdiagnosed, it was sadly not a surprise that none of my doctors back then figured out what was “wrong” with me. But now as I come to understand things more, I am also filled with grief for my past self.
For what could have been parts of my teenage years, or at least what could have improved my symptoms when diagnosed earlier. While living with “what ifs” is not what I want to do, it does still break my heart thinking about the things that I went through, and the ways I (probably at the aid of doctors) told myself the ways that I was feeling were “normal”. I think about tearing when trying to have sex for the first time, how I felt I wasn’t able to provide something that I should be able to provide. Obviously for my partner but also myself.
Grieving Potential and Past Sexual Relationships
As a 16-year-old, I was educated on sex and the female anatomy to some degree – but not enough to question why it wasn’t really working out for me. And so I just took on the fact that I was very prone to yeast infections basically anytime I was intimate with my partner, that while sex itself was painless and pleasurable for me, I was almost always in
extreme pain afterward. How I played it off back then I have no idea. But I somehow did. Knowing now that I most likely had several papercuts all over my vulva from penetrative intercourse explains it, but doesn’t make it any more okay, that I went through that nonetheless, kind of not batting an eye. So as part of grieving my past, I grieve sexual
experiences that could have just been about pleasure from beginning to end but instead were impacted by pain, tearing, or at the very least discomfort.
Grieving the Years Spent in Mental Distress
I wish I didn't have to be in all that pain. Or think something was not normal about me. Or think that the way I felt was my normal. I wish someone could have explained. I wish some doctor would have seen and listened to my symptoms and prescribed me proper long-term medication so I didn't have to be bedridden for weeks because I simply could not move. I wish my teenage years that were certainly filled with freedom could also have been filled with levity or at least understanding of my vulva. But they weren’t. I am grateful to at least understand what was going on back then when looking at it now. But that does not take away the pain I had to endure to come to the diagnosis that was obviously already prevalent then and the things that were lost because of it.
Grieving the Look of my Vulva
As a part of my past, I am also grieving the way my vulva at some point most likely looked like. Since genitals are still way too much of a taboo even in countries with sex education that exceeds “abstinence-only” I was not taught or just told about looking at my vulva. I wish I had. Although it would have probably been terrifying to see the change over the years, I could at least look back on her being healthy as I expect she was at some point, most likely before I became sexually active and my symptoms started getting stronger. It is somewhat crushing to know that I will never know.
I will never know my “original” anatomy before the disease began to eat away at it. While I still have parts of my vulval anatomy, some are gone.
When my first boyfriend told me my labia minora “looked kinda small ” I just laughed it
off and half-jokingly lectured him on not every vulva looking the same. At that point, I had never seen my own.
And now I never will (at least not “as God created it”). I lost part of myself, and while gladly at this point I know that that does not make me any less of a woman, it was still a part of me. A part of my body that is now gone.
Grieving my Future
When my gynecologist (who didn’t even say the name of lichen sclerosus but just scribbled it on a post-it) answered my question: “So when is it going away?” with “Never. This is a chronic disease.” unsurprisingly my world was rocked in the least romantic way you can imagine. I imagine most people who’ve ever received devastating news know the feeling of all air being sucked out of you and your mind suddenly going blank. I don’t exactly know what more my gynecologist told me then, but I know it wasn’t much. I was sent off with a chronic disease on a post-it note to research myself, the only prospect being that I would never truly be rid of it. So as I was feeling that blanket of grief on me it was not just about my past. This diagnosis will always impact me and will inevitably affect my future. On the things, I took for granted. And the way I imagined life – or rather the things I didn't think I'd ever had to worry about.
What does my Future Hold?
While I know that with the current treatment LS is manageable, the heightened risk of getting cancer can be minimized to almost the same as with people without LS and have spoken to many people who are now in remission at my point of treatment I am still faced with uncertainty. I don’t know if I will ever have pain-free sex, or sex at all for that matter.
I don't know if I will find a partner who is willing to compromise, and who I am willing to ask to compromise for me. I don't know if I will be as high functioning as it is demanded and as I demand of myself for my future career. I don't know if I will be able to conceive a baby or birth it vaginally. I have lost the future that I took for granted and exchanged it with a lot of uncertainty.
As someone who is close to obsessed with planning everything, that is derailing, to say the least. And as I have thought about my feelings towards and because of LS I have come to understand that I also grieve the future I thought would be ahead of me. While I am well aware that you can never really plan anything, a change of the outlook of this size is still a tough pill to swallow.
While my brain is trying to protect me by shutting off my emotions, I am still aware that I have to get in touch with it to process the grief. So writing about it here is hopefully just the
first, step on my journey through grief and mourning the loss of parts of my past and future.
-Paulina, 21 y.o. from Germany
Want to Contribute to the Grief Project?
Email me at firstname.lastname@example.org or shoot me a DM on Instagram or Facebook (@thelostlabiachronicles).
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