...
07Dec 2021 by Jaclyn
Image of two people with brown skin and brown hair sitting and laughing and talking with each other. The image is set amongst a pale purple background.

Introduction

Alright, beautiful soul. The holidays are quickly approaching. With that, I decided to write a post about coming out to friends and family with Lichen Sclerosus. Lichen Sclerosus is an incredibly isolating disease. Many of us go months or years feeling like we are the only ones in the world living with LS. Because vulvar Lichen Sclerosus affects the genitals, it can be really difficult to open up to friends and family about our diagnosis. However, I have spoken to many people with Lichen Sclerosus, and this not telling others about their Lichen Sclerosus is not for a lack of wanting. In fact, many people expressed a strong desire to tell friends and family about their Lichen Sclerosus, but they have no idea where to start. Thus, this post will focus on just that by providing some tips and tricks with respect to coming out to friends and family.

Don’t forget to read until the end for this week’s #TLLCTuesdayTip. 

Dealing with Lichen Sclerosus on Your Own

When you are diagnosed with Lichen Sclerosus, it can literally feel like the wind is knocked out of you. You may feel a whirlwind of emotions. For example, you may feel stunned, scared, relieved, angry, confused, or sad. Further, you may completely dissociate (which is what happened to me when I received my Lichen Sclerosus diagnosis). Read my diagnosis story here.

Early in my Lichen Sclerosus journey, I didn’t know a single soul with LS other than myself. When I was diagnosed, my doctor informed me it was a disease that primarily affects post-menopausal folks and that I was an outlier. (I have since learned this is false, but I digress). This made me feel incredibly alone. I felt like an alien, a massive oddity in a sea of folks with normal, healthy vulvas. 

It is quite common to suffer in silence for years with symptoms before finally getting diagnosed, and, similarly, quite common to then deal with Lichen Sclerosus completely on your own once you are diagnosed.

Image of a person with brown hair sitting at an empty kitchen table, representing the feelings of loneliness that often accompany living with Lichen Sclerosus.

However, I really struggled with this aloneness and had a strong desire to come out to my friends and family. I will share my experience with coming out to others at the end of this post, but for now, let’s focus on the pros and cons of coming out to friends and family about Lichen Sclerosus.

Why You Might Want to Come Out to Others: The Pros

  • Coming out to others can help alleviate feelings of isolation.
  • It can give people context for your actions, which can make for better relationships and interactions. For example, let’s say my family is planning a big hike. I say I will participate, but the day before the hike I get a flare. If I simply cancel with no explanation, my family may be hurt by my actions and decisions to not join the family. However, if they know I have Lichen Sclerosus, and I say I have to back out because of a flare, they are more likely to understand and not take my action personally. Thus, giving people context can really help build stronger relationships.
  • Fosters a strong support system. It is wonderful to be a part of a Lichen Sclerosus community to celebrate wins, vent your frustrations, and ask for guidance. However, that support system can grow more if it also encompasses friends and family. And let’s face it, a diverse network of support can really help lift you up. Personally, I like a mix of people with Lichen Sclerosus and friends and family to make up my support system.

Why You Might Not Want to Come out to Others: The Cons

  1. You may not be ready. And this is totally OK. You may want to come out to friends and family but it just may not be the right time; you will know when the time is right.
  2. Requires you to be vulnerable, and this can be very difficult for some folks, especially if you aren’t used to being vulnerable around loved ones.
  3. This may not be the type of support you need (and that is also totally OK). For example, in the list of pros, I mentioned the importance of a diverse support system. However, at the end of the day, the type of support system that is right for you will vary. What works for me may not be what you need.

Tips and Tricks for Coming Out to Others

What follows are some tips and tricks I have with respect to coming out to friends and family (if this is something you would like to do but have no idea where to begin).

The Early Stage of Coming Out

  • Know your why. That is, why do you want to confide in others in the first place? For instance, are you looking for support? Or are you hoping to give them context for some of your actions? Are you looking for someone to vent to? Do you need warmth and compassion? Know why it is that you want to tell people.
  • Building on this, different people may have different ‘whys’. For example, the reason for confiding in a couple of my close friends was so that I could just cry to them and express my emotions authentically. Similarly, the reason I told my step-mom and close friends was for compassion and understanding. Conversely, I confided in my sister because I knew there was a potential genetic link, and I wanted her to be aware of both her health and the health of her daughter. 
  • Use your why to draft what parts you want to disclose. Remember that coming out to friends and family doesn’t mean they all get a play-by-play on all your thoughts, feelings, and a detailed image of your vulva. You may disclose more or less to others depending on the reason fueling your coming out and depending on your relationship to that person. Know all the points you want to hit on and know what you need from this conversation.

The Later Stage of Coming Out

So you know the why behind telling others about your Lichen Sclerosus and you’re getting close to confiding in someone; here are some more tips on how to proceed.

  • First, ask the person if they have time to chat. Specify approximately how long you need and whether you want to do it via text, phone call, or in-person. The last thing you want is to start telling someone about your Lichen Sclerosus and they tell you they are about to head out. This can be quite jarring. In order to ensure they can be present with you for as long as you need, it can be helpful to ask them first. For example, I usually say something akin to “hey, would you happen to have space and time for a 30 minute phone call?”. This way, the person in question can tell me when they have 30 minutes they can dedicate to my call.
  • Second, if you are worried about catching them off guard, or, if you are worried they may not be comfortable discussing your vulva, give them a bit of a warning. Adding on to my statement above, I typically say something like, “hey, would you happen to have space and time for a 30 minute phone call. I’m really struggling right now and could use a friend to talk to. Fair warning, this conversation involves a disease that affects the vulva – would you be comfortable with this.

The Conversation

So your family or friend says they have the time and space for you and do not mind at all if you discuss your vulva – what’s next? Let’s talk about the actual conversation.

  • Acknowledge where you are at. Let’s face it, coming out to others about Lichen Sclerosus is very nerve-wracking. This is incredibly vulnerable for us. Wherever you are at, whatever emotions or feelings are present, acknowledge them with gentle warmth and compassion. Know that vulnerability is another component of being human and it is beautiful.
  • Try shaking or dancing out some of the nerves prior to the discussion.
  • Remember that your friends and family love you and want the best for you.
  • Set expectations. If you’re a crier, let them know you may cry on the call. If you’re shaken up and confused, let them know you’re a bit of a mess and you may not be super clear.
  • Start with what Lichen Sclerosus is in general. Tell them it’s a chronic, inflammatory skin disease that is considered to be autoimmune. Describe the main symptoms and how it is managed.
  • Move slowly in the conversation. Check in with yourself as well as the other person. For instance, after saying what Lichen Sclerosus is in general, ask yourself, how am I doing? Is this enough for today or do I feel safe to dive into the more personal aspects of Lichen Sclerosus. Furthermore, check in with the other person as well. Ask how they are feeling and if they have space for you to continue. If they do, continue until you hit an authentic stopping point.
  • Celebrate! Regardless if you got the response you were hoping for, coming out to others is a big deal. It is incredibly difficult, so give yourself a huge pat on the back and practice some self-care.

My Experience Coming Out to Others

I’m fortunate that everyone I came out to was incredibly warm and supportive. When I was diagnosed, I didn’t know anyone with LS, and, consequently, I had no one to confide in. Thus, I felt even more compelled to tell others because I knew bottling it in wouldn’t be good for my mental health. The day I was diagnosed, I called my stepmom, my dad, and my sister. Later when my husband came home from work, I told him. Everyone was incredibly understanding and compassionate. I was a blubbering mess when I told them, but nonetheless, they met me where I was at and offered me tons of support and love.

After this, I messaged some of my close friends. I asked them if they had time and space for a conversation, and I warned them I’d probably cry and that it was about my vulva. I was quite nervous, but they honestly blew my mind with their level of compassion. They were so warm, caring, and reassuring. They assured me they would still stay with/date someone with Lichen Sclerosus, and that my vulva was beautiful even if I was super small down there and lost my labia. This honestly really helped up my confidence.

Image of a person in a bathtub, representing the bath I took when I was flaring at my friends house and told her about LS and asked if I could soak.

And now, everyone and their neighbor know I have Lichen Sclerosus and I’m happy about this. It makes my relationships and interactions with others so much easier. For example, once I was at a friend's house getting ready for a wedding. I pulled the owner aside, explained I had LS and that I was flaring and if I could step away from the festivities and soak in the tub and apply my steroid.

She said absolutely, set me up in her bathtub, and said if I needed anything else to let her know. I was able to enjoy the rest of the day because of this instead of toughing it out and suffering in silence. For me, it feels liberating and empowering to tell others about my Lichen Sclerosus.

Conclusion

To conclude, there are a number of reasons why you might want to come out to friends and family. For example, it can help build stronger relationships, create a stronger and more diverse support system, and provide context to your actions. In this post, I shared my tips and tricks to make coming out to friends easier. Be sure to bookmark this page to come back to it when you are ready to tell others about your LS.

#TLLCTuesdayTip: Practice self-care after you tell someone about your Lichen Sclerosus. This is very vulnerable and can bring up a lot of emotions.

Reach Out To Me

Send me an email by filling out my contact form here or send me a DM on Instagram, TikTok, or Facebook (@thelostlabiachronicles).

Sign up for Lichen Sclerosus Support Network's Virtual Meetups here:

Lichen Sclerosus Support Virtual Meetup Sign Up Form

Disclaimer:

*The Lost Labia Chronicles does not provide medical advice or engage in the practice of medicine. The information provided by The Lost Labia Chronicles is for education and entertainment purposes only and does not under any circumstances constitute medical advice. Please consult with your healthcare provider before making any changes to your healthcare plan.