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Introduction And Excited Announcements
Hey, and welcome! I’m so glad you are here to join a round table discussion about the concepts of acceptance and resilience we had live with some members of the LSSN membership. The concepts of acceptance and resilience are critical to living with a condition such as Lichen Sclerosus. In this discussion, I asked our participants a series of questions relating to these concepts and Lichen Sclerosus.
What is your definition of acceptance and resilience? What do those words mean to you, specifically concerning your Lichen Sclerosus?
I think of the concept of acceptance as being able to admit that you have a condition/disease without simultaneously giving up/throwing in the towel. Acceptance for me means my Lichen Sclerosus is a part of me, but it is not all of me. Resilience means taking whatever you have experienced –and all the pain that comes with it—and moving forward. It means using your pain for good. For example, in my case, I’ve shared my story on social media as well as the podcast. Further, I now discuss Lichen Sclerosus with others to help raise awareness.
Acceptance means getting to a point where you aren’t consumed by your Lichen Sclerosus. Resilience is getting to the point where you accept it and move on. Thus, acceptance and resilience are rather similar and inextricably linked.
When I was first diagnosed, I was in complete denial. I didn’t research or try to learn about Lichen Sclerosus, nor did I discuss it with anyone. I was paralyzed with denial and then fear. However, in time, I admitted it to myself. After this, I was able to share with my spouse and then friends and family. Being able to find support through others, I found the strength to start researching and learning more about Lichen Sclerosus and how to manage it. Acknowledging your Lichen Sclerosus, sharing with others, and learning about the disease and how to treat optimally are all part of acceptance for me.
Acceptance means loving myself and taking the best care of myself. Resilience means doing what Kathy and Jaclyn are doing. For example, in their cases, running podcasts and support groups, writing blogs, and taking to social media to raise awareness. They both just keep going regardless of what life throws at them.
Jaclyn, on Acceptance:
For me, acceptance means being OK with not always being OK.
Specifically, it’s about making space for the uncomfortable feelings that accompany an LS diagnosis: fear, anger, shame, guilt, etc. Moreover, acceptance is being able to sit with those feelings while also not allowing those feelings to be all-encompassing in such a way that prevents you from living a meaningful life that aligns with your values.
For example, if one of your values is being present with your children, acceptance might look something like the following. You might say, “OK, I have LS and I’m in a flare and this sucks; I hate that this is happening to me. Instead of taking my kids to the park, which would require too much walking, we will have a pizza night and watch their favorite movie. I will use my ice pack for the itch, and I will allow myself to hug my children and laugh with them. Afterward, I will put on my steroid as instructed”.
In this situation, you acknowledge the unpleasant feelings of associate with the flare and modify your life so that it doesn’t consume all of your space. Accordingly, you still live a life that aligns with the values of being present with your children by eating pizza, hugging, and cuddling with them whilst laughing and watching a movie.
Jaclyn, on Resilience:
I see resilience as the ability to stand back up after you have been knocked down. I think the concept sits on a spectrum. Further, I think everyone in the LS Warriors and anyone out there listening or reading the show notes is resilient, because you are here. You are actively participating in your life and taking steps to learn more and to grow. You were diagnosed with a hard disease; a disease that comes not only with some incredibly painful symptoms, but that also comes with a great deal of mental suffering.
You have felt shame, guilt, anger, loss, and so have I. Nonetheless, we are all still here. That is resilience. It’s showing up time again, despite being thrown my blows and curveballs.
Both acceptance and resilience are a journey. Life is a constant ebb and flow of good and bad. We are resilient because we ride those ways. Critically, our work on acceptance and resilience will change along with the tide of life; acceptance and resilience will therefore look different at different stages of our lives.
Wendy, on the definition of acceptance and resilience:
Acceptance is coming to terms with your condition and not letting it run your whole life. Resilience is the ability to keep moving forward.
For me, resilience comes first. I think you have to get resilient to reach acceptance. Resilience is having the mindset that bad stuff happens, but nonetheless, not letting it take over your life. It’s knowing that LS is just one piece of your life. If you let that piece take over, you aren’t being fair to yourself.
Acceptance with LS looks like you saying, “OK, I accept this piece of my life. It’s not a great piece, but it’s there. This piece sucks, but I accept it”. Then resilience kicks in by saying, “OK, I will still find the pearl in the mess, I will find joy amongst this chaos. I will not let it steal my joy”. It’s about putting that piece into proper perspective.
As Jaclyn said, every one of you in and outside the LS Warriors membership is resilient. You are all strong warriors who are trying to better themselves by learning via the podcast, interviews, journals, support groups, etc. Therefore, for me, yes, I have LS, and yes, it sucks. However, I will fight back and I will learn how to conquer it and live my best life.
Do you think acceptance and resilience are important to your health journey, and why?
Yes, very much so. Many negative emotions come with an LS diagnosis. For example, I feel a lot of sadness and worry. I miss the days when I was carefree. Both concepts are important so that you can balance out those negative feelings and find a way to take back your life and be happy.
Yes, because without them, your life will be on hold because it’s hard to do anything else other than ruminating over worries and fears.
Yes, it is important. In my case, because I initially couldn’t accept my diagnosis, I was unable to take care of myself properly. Therefore, it’s important on a practical level. That is, if you are in denial, you won’t look into best practices for steroid use, potentially locating and working with a pelvic floor physiotherapist, etc. Furthermore, without them, you aren’t living; you stop doing what you love because the negative emotions take up all your time and space.
Therefore, acceptance and resilience are fundamental for my health journey. In fact, I remember one day getting really mad. I said out loud:
“No! I want to live my life, I’m not saying goodbye to my social connections, I want to be out gardening, playing with my grandkids, etc.”.
Thus, I think resilience may have a tinge of anger to it.
Yes! Exactly! It’s that fire in our bellies; it’s that fighting spirit! And with that, you took one huge step in your journey, and I am so proud of you for this.
Jen on the importance of acceptance and resilience:
Absolutely agree with everyone. Without acceptance and resilience, it’s hard to deal with LS. And, further, as you and Jaclyn know, over the last couple of months, I have revamped my whole life. For example, I have taken all of my anger, met with you, shared my story, and brought LS awareness to others. It’s key to staying positive and being OK with LS, knowing that it’s a part of us but not all of us.
Yes, we can’t let it consume us. I think what helps with acceptance is having a plan. This includes having a great team of doctors, therapists, and support groups. These are the three legs of the stool of acceptance, as I like to call it. This means if I flare, I have a plan and a group of people I can seek support from to help me through the flare.
I will re-phrase this question for Jaclyn differently since you’ve reached acceptance. How do you think acceptance and resilience have improved your health journey?
Acceptance and resilience have improved my health journey by making everything feel lighter.
Early in my journey, everything felt so heavy. For instance, putting in the work felt like I was trudging through thick mud, up to my knees, with the weight of the world crushing on my shoulders. Over time, however, as I did the work, the mud because less thick, and the weight on my shoulders slowly lightened.
Acceptance and resilience for me mean having an improved quality of life; being able to enjoy things I wasn’t able to before.
I agree having a strong team helps; so does having a plan. I have plans for how to modify certain things in my life so that I can enjoy them. For example, if I want to go on a hike with friends, I know I need to bring a pot of coconut oil in my bag to use throughout the day. Or I need to use dilators to help with penetrative sex.
Acceptance is an ever-changing journey.
However, knowing that you need to make modifications can be another point in your journey of acceptance. That is, you might feel angry that you even have to make modifications in the first place. You may long for the days when you didn’t have to think so much to do activities you enjoy. It’s important to feel and work through those feelings at this stage. Acknowledge them, stay with them, listen to what they are telling you, and work with them. I’ve done this work and I’m now at a place where modifications are just second nature to me.
In sum, acceptance and resilience being living a life with more joy, lightness, and having a good quality of life. And this is important because every one of you deserves a great quality of life.
Jen, have you found acceptance with your LS?
Yes, I am in a much better place with my LS now than I used to be. If I were to flare tomorrow, it wouldn’t put me into a downward spiral. For example, I flared in January. I used my betamethasone for two weeks and then moved on. It helped to have a great support group to help me through this process.
I want to add that while I am in a place of acceptance, I want to highlight acceptance for me is an ongoing journey. For me, it is not about achieving full and perfect acceptance; I do not believe this exists. I wouldn’t be human if I could achieve this. Thus, I think it’s important to have a realistic concept of acceptance.
When I say I’ve come to a place of acceptance, this doesn’t mean all my days are great. I have my moments, too. Further, as Jen noted, it is much easier to be accepting when you’re symptoms aren’t raging out of control; I think it is important to acknowledge this point.
I have been in remission for almost a year, but I’m well aware that I will flare at some point in my future. When this happens, I’m sure I will feel disappointed, frustrated, and worried. And that is OK. Part of acceptance is meeting yourself where you are at, and not beating yourself up when you have bad days.
Importantly, if you have a bad day, week(s), month, you are not failing at acceptance. You are working towards and with acceptance.
100%. In January, I did a vulva check and realized I had complete clitoral phimosis. I thought I was prepared for this, but it knocked the wind out of me, metaphorically speaking. I cried for a few days and vented to the people in the LS Warriors membership who helped me through this stage of denial, grievance, etc. That’s when the support leg of my team came into play.
And I ended up finding the positive: I still had sensation, I could still orgasm and have pain-free sex, and I was still just as feminine as I had ever been.
What do you think you need to work on to reach acceptance and resilience?
I need to work on my anxiety and finding a good team. I have a great support group, but I’ve run through many different doctors trying to find a good fit. At the end of the month, I will see a new doctor, so fingers crossed she’s a good one. I sometimes feel like I am making strides, but then something crops up and I feel like I am back in the mud. Last night was rough; I barely slept. However, I’m trying to allow myself to feel this and then pull myself back up and focus on creating a good team.
Yes, and give yourself grace; you have a lot going on. And give yourself credit! You had a terrible night and yet you showed up here, today, for a discussion that I’m sure you knew would be difficult, and you came nonetheless.
Acceptance is about baby steps. Jaclyn discusses the importance of baby steps and healing in her interview here and here. Don’t give yourself a time limit for this process; listen to your body and mind and honor where you are.
You may not have your complete team, but you have us! Use the LSSN membership for this. Create posts asking questions or asking for support. Shoot us a DM. We have members in different time zones; it is likely someone will be available.
I still have a lot to learn about LS, but I am getting there. When I joined the membership, I felt overwhelmed by all the information, so I’m working through it slowly, at my own pace. Monday, I will be seeing a pelvic floor physiotherapist, so I’m excited about this and what it will add to my journey.
For me, it’s cultivating a positive mindset because LS is hard, and I think until you walk in our shoes, you can’t possibly understand what it’s like. Thus, I think focusing on cultivating positing thinking and hope.
In sum, I want to thank each of you, ladies, for joining in on this amazing conversation today. I learned a lot and I hope you did too. I hope we can all continue on our journeys to acceptance and resilience together.
Virtual Meetup Information
Did you learn anything new from this episode? How did you find the round-table free-flow discussion? Where are you at with your journey of acceptance and resilience? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.
Better yet, why don't you tell us at our Lichen Sclerosus Support Virtual Meetup?!
We meet every other Saturday from 2-4 pm and/or 7-9 pm Eastern Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask a question to the group. Perhaps share your experience with appointment anxiety! I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
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