The Grief Project: Pernille’s Story

Introduction

Grief is complex and multifaceted. Often, we grieve without even knowing that what we are experiencing is grief. This is especially common with lichen sclerosus where we grieve many aspects of the person we thought we would be.

The Grief Project is a collection of voices from people around the world with Lichen Sclerosus, sharing their experiences and journey with grief after their LS diagnosis. Today, we have a deeply moving piece by Pernille, who shares their journey with grief and lichen sclerosus. Pernille has been through a lot, and I think many parts of her story will resonate with you. I'm so grateful this brave soul opened up and shared with us.

Without further ado, here is Pernille's story.

A Whole Lot of Grief

It hit me slowly, in stages almost. It had been a hard winter, and I already had enough on my mind. Two miscarriages within six months, a rocky relationship, a new job, and an estranged relationship with my father. And then on top, this weird new disease between my legs. I had to take it in slowly. 

Struggling to Get a Diagnosis

Going to the doctor with my itching and stinging vulva in the first place was something I had postponed for a long time. Being pregnant a couple of times and losing it again within a short period of time kind of took precedence over everything else in my life. I went about my daily life and routines in a bit of a daze, and as for my aching vulva/vagina, I simply thought I had hormonal changes from the latest pregnancy in combination with a really stubborn vaginal yeast infection –  something I had suffered from on and off before.

I kept buying over-the-counter products to relieve the itching and stinging sensations. But my discomfort made it more and more difficult to maintain an active sex life, which obviously is crucial if you are trying to get pregnant. Perhaps I should also mention, that I am in my forties, and I do not have any children, so I felt the biological clock ticking extremely loud.

Therefore, and mainly for that reason, I finally went to the doctor. I had absolutely no suspicion of any serious condition, because I had seen several gynecologists during my recent and short pregnancies, and none of them had commented on anything unusual. 

Processing my Diagnosis

My g.p. is a white forties-something male, and after a brief and uncomfortable examination he plainly stated: “Well, I don’t think it’s cancer, but it could be lichen”. Boom. And then I got a referral to a gynecologist. He told me to make an emergency appointment, so I knew something was in a bad state, but it didn’t quite reach me in my bubble. “Not cancer”, I repeated slowly, like he had spoken to me in a foreign language. That was all that got through, and then I went home.

I was diagnosed shortly after by the gynecologist, who took a biopsy, but even just by looking at my labia, she knew: “It definitely looks like Lichen, I have diagnosed three already earlier today. I don’t know what it is about this disease, why so many all of sudden have it. It is a mystery. It looks like an epidemic, but we do not know why”. She shared all of this with me with such joy and enthusiasm like I was a colleague with whom she was sharing this rare and interesting medical finding. I retreated into my bubble again. 

How Lichen Sclerosus Affected my Relationship

My boyfriend did not consider it a serious matter. Like with the preceding miscarriages, he just uttered something along the lines of: “It will get better” when I came home in my daze and quietly reported: “not cancer, lichen, auto-immune disease, forever, difficult sex life”. I guess, well I hope, it was his coping strategy to bury his head in the sand. Personally, I altered between tearing up, feeling alone, trying to cheer myself up, and going numb. A few weeks later, we broke up. 

How Lichen Sclerosus Affected Other Aspects of my Life

That is three months ago now. I have a lot of things to grieve over, and LS is just a part of it. I grieved the loss of my relationship, the loss of the children I thought I was going to have, the satisfying sex life I thought was going to be a natural part of my life, going swimming regularly (my favorite thing), the possibility of having a new romantic relationship in the future, and the prospect of ever fully recovering. 

Where I am with Grief and Lichen Sclerosus Today

To be honest, it is all too much, too big of a pill to swallow. So I break it up into little pieces and have a taste of it now and again. Writing this is part of it. Otherwise, I sit quietly with it in the morning or take it with me on my evening walks, where I watch the calmness of the ocean or the pink evening sky. And the summer has been kind to me.

Much kinder than the winter. I have been swimming in the sea and gone sunbathing naked – both of which gave me great physical relief and also made me feel happy and alive.

I have also found the energy to meet others with LS online, and kind women have shared their personal stories with me. Their initial despair, so much like my own, how they have handled it, in so many beautiful ways, and how they now manage to live fine lives. Lives full of love and tenderness and belonging – all that I thought was lost, and sometimes still think is… But they have given me hope. You, out there, have given me hope. And we can give others hope too by sharing our stories.

-Pernille, Denmark

Conclusion

To conclude, I want to extend a huge thank you to Pernille for her vulnerability in sharing her grief story with other LS warriors. I honor and witness your strength and bravery. Please share what resonated with you in the comment section below.

Read more from The Grief Project by clicking the button below.

1:1 Lichen Sclerosus Peer Support Calls with Jaclyn from TLLC

If you are struggling with grief and emotions, feel free to book a 1:1 call with me. Simply click on this link to learn more about lichen sclerosus peer support calls.