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How to STILL have a great relationship DESPITE Lichen Sclerosus

How to STILL have a great relationship DESPITE Lichen Sclerosus

Introduction

Hey! Welcome! Have you ever thought about how Lichen Sclerosus will or has affected your relationship? Have you felt like Lichen Sclerosus was a death sentence to your current or future relationships? If yes, you want to listen to this episode. In this episode, I provide actionable tips about what we can do for our partners, what they can do for us, and what we can do for each other in order to have a great relationship.

Image of a happy looking couple in a relationship showing what is possible for you, even if you have LS

So, grab your partner and give it a listen together or have them listen to it on their own.

Inspiration for the Episode

This podcast episode was inspired by a man who reached out to me on Instagram. He was looking for advice on how he could support his girlfriend who was newly diagnosed with Lichen Sclerosus. It was incredibly touching to have a conversation with someone who genuinely wanted to learn more about his partner’s condition and how he could be the best person for her.

How Has Lichen Sclerosus Impacted My Relationship?

And this got me thinking about my relationship with my husband and wondering how he feels about my Lichen Sclerosus. Of course, we have had conversations about Lichen Sclerosus. For example, I share new research that I find about it, and I have asked him if Lichen Sclerosus has changed the way he feels about me. However, I never asked him how Lichen Sclerosus has affected him; what is he going through.

Critically, in relationships, Lichen Sclerosus doesn’t just happen to one person. Lichen Sclerosus didn’t just happen to me; it happened to us. It changed me as a woman and how I responded to him as a man; that’s heavy. Because he was so supportive, it never occurred to me Lichen Sclerosus forced him to change too.

Relationships and Lichen Sclerosus

This sent me down a path to researching how we can support each other through this. Despite there not being articles about relationships and LS, there are many articles on relationships and chronic illness.

How LS Can Affect Our Relationships?

Unfortunately, I’ve spoken with many who have broken up with their partners because of their LS. I do not think the disease itself causes breakups, but it can highlight and magnify issues that are already in the relationship.

For example, if there is already a lack of trust, then your partner may not believe you when you say you need to abstain from sex because you’re in a flare.

Image of a couple in a difficult time in their relationship. Both parties are looking unhappy and upset.

Another way it affects our relationships is through our personality. That is, LS affects our mental health which, in turn, can change or alter our personalities. For instance, the person who was once carefree and spontaneous may become reserved, anxious, and withdrawn. Thus, our personality and behavior change, and our partners might feel this isn’t the person they started dating and want out.

I have heard these reasons for relationships falling apart. However, on the flip side, I have heard of relationships becoming strong because of LS. These partnerships navigate the emotional rollercoaster and changes in their sex lives and they create new dreams and deeper connections; they come out of it closer and stronger than ever.

How to Develop a Stronger Relationship with your Partner in Spite of LS?

Most of the tips I will give you aren’t just good for relationships and LS/chronic illness. Instead, they are general tips that apply to any relationship.

Communication and Relationships

First of all, communication is key, especially with LS. Tell your partner where you are at physically and emotionally with your LS, and tell them what you need to be supported. Importantly, tell your truth without feeling guilty for having the emotions and feelings you have; these are valid feelings to have. Being heard and understood goes a long way in calming our anxieties. At the same time, we need to tell our partners what is going on in our heads and what we need because they cannot read our minds.

Vulnerability and Relationships

Second, be honest and vulnerable. Be honest with yourself and with each other. Don’t minimize your fears because you think you will upset your partner. Instead, you’ll set yourself up for failure, and when you don’t get what you need, you’ll grow resentful. At the same time, you don’t want to overwhelm your partner. Thus, if you have a lot going on, instead of having one big drawn-out conversation, have smaller talks where you add bit by bit on what you are going through.

Intimacy and Relationships

Third, maintain some level of intimacy! Keep lovin’ on each other. Continue doing the little things for each other. Don’t let Lichen Sclerosus change how you treat your partner or yourself. Tell your partner they are sexy, give them kisses, let them feel the love. Even if penetrative sex is off the table and/or you’re in a flare; kiss, cuddle, hold hands, flirt, date each other. This keeps you connected and helps reduce stress (which, consequently, reduces flares). Have penetrative sex if/when you are ready but never force yourself to do it. Experiment! Try introducing toys and new ideas to try. 

Image of a couple in a relationship holding hands, which can be a great way to connect and maintain physical intimacy when in an LS flare.

To the Partners of Someone With LS

This next piece is for the partners of someone with LS. The best way you can support your partner is to listen to them and ask questions/educate yourself on their disease. 

First, when we tell you, for the 20th time, there is a forest fire in our vulvas, we aren’t telling you to annoy you. We are telling you because we need you to understand what it’s like for us; we need to feel heard and seen. Thus, listening to your partner and making them feel heard is extremely important.

Second, believe us when we tell you what we are feeling. Not just sometimes, but every single time. Do not make us feel guilty for not being able to have sex. Believe us when we say we are in pain and uncomfortable from the Lichen Sclerosus.

Third, when we are cranky because we are in a flare, try not to take it personally. It’s the fissures in our skin; they burn, they sting. It’s the stabbing pain and relentless itch. Thus, if we aren’t a bit cranky and you know we are in a flare, know that it isn’t about you.

Fourth, it is exhausting being in pain all the time. Therefore, if you know we are in a flare, try and make life a bit easier on us. For example, help out with the chores or the kids a bit more so that we can stay in one spot and rest and do what we need to do to feel better. 

Finally, learn about our disease. Read an article, listen to my podcast. Learn more about what is going on in our bodies, because it will make it easier for you to emphasize.

Similarly, it shows us you care because you went out of your way to learn more about what we are going through. Further, it lessens the burden off of us to also educate you.

Image of a person at the computer doing research, representing how partners without LS can support their partner by researching and learning about LS.

Three Ways People with LS Can Support Their Partners

  1. Be vulnerable and state your needs. Don’t try and be superwoman and handle everything. Your partner isn’t a mind reader. If you aren’t doing well, open up to them about what’s going on and what you need from them.
  2. Don’t lash out at your partner. Remember, this is new for them too. It will take time for them to adjust.
  3. Express gratitude for all the efforts shown by your partners. Thank them; let you know you see them and the effort they put in.

Conclusion

In sum, there are a number of ways we can show up for ourselves, our partners, and our relationships. While these tips aren’t exclusive to dealing with LS in a relationship, they can certainly be of benefit nonetheless. I hope you found some of this helpful!

Let me know, did you listen to this with your partner? Did it spark conversation? Do you plan on implementing some of these tips?

Let me know! Email me at kathy@lichensclerosuspodcat or DM me on Instagram @lichenscleoruspodcast.

Or better yet, let me know at one of our Lichen Sclerosus Support Virtual Meetups. We meet every other Saturday, from 2 pm – 4 pm and/or 7 pm – 9 pm EST. Click the button below to sign up and get on the list!

By Kathy

I'm 42, a wife and mother of three. I have been suffering from Lichen Sclerosus since 2013. I started this podcast to build community and learn more about this incurable condition.

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