I planned to talk about histamines today as a follow-up to the oxalate post from yesterday. But one of the posts in the online LS community last night turned my attention.
It’s easy to forget how challenging the initial days after diagnosis can be. And, perhaps, a part of me keeps pressing forward in research and spiritual practices to keep me from sitting too long with the remnants of remorse, loss and anger.
Who am I kidding? I’m like the Hulk. My secret is: I’m always angry. There’s a simmer under the surface that drives me forward and creates clarity on my next steps.
Anger can be explosive and toxic. It can also be transformed into motivation, swift action and fortitude. When tempered with compassion, it’s alchemy I’ve come to understand.
So, what’s important about lichen sclerosus and mental health?
There are elements of LS that I’ve yet to cover. Honestly, when I committed to these 30 days of raising awareness for LS, I had no idea how much energy I would invest in this expedition. There’s much to unearth.
And much to be present with along the way. Including:
- The anger that comes from misdiagnosis or not being heard by your doctor
- The confusion about how this happened to you and what it even is
- The frustration of figuring out a treatment plan that works for you
- The potential loss of sexual intercourse with your partner
- The guilt that accompanies canceled outings, events and romantic encounters
- The grief if scarring has changed your vulva: clitoral phimosis, absorbed labia
- The fear of the increased risk of cancer or blocked urethra
- The loneliness of being diagnosed with a ‘rare’ condition
- The shame that comes with old stigmas around ‘this part’ of the body
- The overwhelming burden of being told you have to manage this for the rest of your life
- The pain that often accompanies LS that makes work, sleep, cycling or even swimming a challenge
- The resentment when you read about others in remission and you’ve done everything you believe you can but still suffer
- The helplessness you feel when others claim it will get worse or there’s no cure
I am not trying to bum you out. This is a post on mental health, after all!
I am trying to convey 2 things to you:
1. FEEL everything you need to feel.
I did a lot of crying, blaming and swearing those days after diagnosis. And then I got to work on research, sobbing and swearing intermittently. I turned to my practices (especially qigong – I’ll write about that later) to help me handle the emotions. And then I gathered my team of wellness practitioners.
I booked 2 sessions with a trauma-informed therapist. Though we talked more about things other than my LS, I believe those issues played a part in my overall burden of stress. My GYN happens to be at a dermatology clinic that specializes in vulva disorders. (I prefer not to tell my vulva she has a disorder. She’s doing awesome. And teaching me a lot about her care). And, I have an amazing pelvic floor therapist on my team.
2. Understand what someone with LS is going through
We can feel helpless when someone we love is suffering. Especially if we don’t know the extent of their struggles. LS is unique to every person. Having a conversation about how you can help and what that individual needs (often a hug is enough or a soak in a tub) goes a long way to providing support.
Here’s the thing. FEEL all of what you need to feel and then ask yourself if it’s true. You can’t bullshit your feelings. Whatever will be triggered by this diagnosis is going to be triggered. Let it come. Create a safe environment for it all (I’ll be writing about practices to help you in coming posts). Then find out what’s true for you.
There is a member in one of the online communities who loves to tell people ‘there is no cure’, ‘if you don’t use your steroid, you’ll get cancer’ … and it really angers me. I get it, she’s struggling with her own diagnosis. In a way, she’s my teacher. I direct my anger towards finding and sharing resources that show how most with LS are not only managing but thriving!
Once diagnosed, my health improved in many more ways than just with LS. Of course, it does! Because you’re consistently working towards a greater state of well-being. There’s an upside to LS.
Not to mention the conversation that is being elevated about vulvovaginal health!
In my early days of diagnosis, I felt defeated. It’s been a long run of spinal injuries and now this?! Fuck off, Universe. (That’s 2 f-bombs in 2 posts. The remainder of the series will be f-bomb free.)
BUT! I am reinvigorated, inspired and charged by a newfound curiosity in nutrition, the body, the human condition, women’s health and the body/mind/spirit connection. More than that… the insights I’ve gained into my own nature, along with the connections made through working in community with women sharing resources and love, are gifts.
Knowledge is power. And so is community.
You are not alone. Allow yourself to feel all the feels. And find your support team. Let’s lift one another up. Don’t ever feel bad about feeling bad about LS. 😉
Just don’t make that your home.
Oh, and Universe, I love you. We’re good, right?
Read the next post in the series: Lichen sclerosus and histamines
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**This blog is meant to inform, not diagnose or treat specific health conditions. It is not a substitute for professional medical advice, diagnosis and treatment. Always consult your doctor or health care practitioner.