In my last few posts, I have been writing about the various emotions and mental health issues that you may experience while processing a Lichen Scleorsus diagnosis and living with the disease. I blog about anger here, and different aspects of fear here and here. In this post, I want to focus on a more abstract aspect of mental health that you may struggle with. This aspect is harder to articulate than anger or fear, but it is incredibly important to discuss, nonetheless. That is, I will be discussing expectations about progress with Lichen Sclerosus. If you’ve ever found yourself saying, “why am I not better yet”, “why isn’t this working”, “other people seem to get relief faster, why am I still in pain”, “I feel better physically, but the mental effects of this disease are still tearing me apart and I know I should be better by now”, etc., then this post is definitely for you.
Don’t forget to read until the end for this week’s #TLLCTuesdayTip.
A quick search on www.dictionary.com states progress is defined as “a movement toward a goal or to a further or higher stage”.
Oftentimes, we think of medicine and healing as a linear process. For example, if you have a sore throat, you go to the doctor and they perform an oral exam and swab. After the results are in, if you are positive for strep, you are prescribed an antibiotic such as penicillin.
Typically, once you start taking the antibiotic, you feel progressively better. Each day, you feel a little bit better, until after about 7 days, the infection clears and you go back to living your normal life.
In this case, a sore throat is the problem and the goal is to get rid of it. And, in this example, the progress – i.e., the movement or trajectory towards the desired goal – is linear. That is, once the solution (i.e., the antibiotic) is implemented, you feel better and better as each day progresses.
While progress sometimes is indeed linear and uncomplicated, in many cases, progress isn’t linear at all.
Similar to the strep throat example, I had physical symptoms causing pain and distress. When I was diagnosed with Lichen Sclerosus, I was prescribed medication (Clobetasol). With the abysmal knowledge I had at the time about Lichen Sclerosus, symptom management, and steroids, I thought once I started using the Clobetasol, much like taking penicillin for strep throat, I would feel better in a couple of days and after a week or so I would feel nothing.
But I didn’t.
In fact, initially, I actually felt worse in the beginning. I felt more itching than ever before when I applied the Clobetasol. After a week of not feeling better, I started to feel dismayed. I thought the steroid wasn’t working, or there was something wrong with me, or maybe the reason I wasn’t responding to the treatment that I had vulvar cancer in addition to Lichen Sclerosus. If you have fears about developing vulvar cancer, definitely read my post on fear and the importance of education here.
I kept up with the steroid medication despite feeling worse because I didn’t know what else to do. And, from previous experience recovering from a back injury and dealing with trigeminal orofacial pain, I did know that sometimes things have to get worse before getting better. In times of distress, I tried to remind myself of this.
After the first few weeks, things did start to get better. I started to see some progress. I wasn’t itching as much, and my ‘papercuts’ – I called them papercuts at the time because I didn’t know the proper term was fissures – were starting to feel a little bit better. Finally, I began to feel some hope.
Although my progress wasn’t occurring as quickly as I initially assumed it would, I could see progress beginning to happen. My goal was to not feel any burning, itching, stinging, tearing, etc., and while I wasn’t there yet, I could start to see progress in reaching that big end goal.
Unfortunately, this hope was relatively short-lived. Three months in, after starting to feel much better, I had a flare-up. All of the sudden, after a couple of months of seeing a good 80% reduction in my symptoms, I felt crazy itching, burning, and stinging again. I felt like I was back at square one, which led to a pretty big mental breakdown. I still had 6 months until I could see my gynecologist and I felt so defeated.
Why was I getting worse? Why wasn’t my steroid working?
I called my doctor who told me stress can flare up Lichen Sclerosus, and continue to use my steroid daily until I could see the gynecologist. Of course, I listened and was compliant with her instructions, but my anxiety was at an all-time low because of this setback. I was unable to appreciate the subtle ways in which progress occurs and the fact that it isn’t always a clear trajectory forward.
This flare did eventually settle and I did go through some more ups and downs during my first year with Lichen Sclerosus. However, in time, things really were getting a little better each time, I just couldn’t see the bigger picture of my progress then because I was so overwhelmed by the unrealistic narrative of progress being linear.
Furthermore, another factor adding to the distress about my progress was my lack of understanding about Lichen Sclerosus and not having a clear view of what I should be expecting.
Critically, when I was diagnosed with Lichen Sclerosus, I knew nothing about it, other than it was presumed to be autoimmune with a genetic component. Here is what I would tell 31-year-old me now if I could go back in time and talk to her.
First, I would tell her the goal is to get into remission. What that means is upon clinical examination, there is no more active disease on the vulva (your doctor will determine this). Once in remission, you will experience a significant reduction in symptoms or may no longer have any. However, remission is not a cure. There is currently no cure for Lichen Sclerosus, so your goal is to get into remission and resume all activities you enjoyed prior to getting Lichen Sclerosus.
Second, getting into remission takes time. This won’t happen overnight and the time it takes varies per person based on a multitude of factors. Therefore, it is best to not give yourself strict timelines as to when you will feel better. Typically, remission is achieved 3 months onward, but some may take more or less time, so don’t compare yourself to others. Having realistic expectations will make those bumps in the road way less jarring than if you expect to be in remission in 1 month with no complications.
Finally, know that progress often isn’t linear. You may experience some bumps in the road and setbacks, but these do not necessarily indicate treatment is failing. Just because your progress isn’t unfolding in the way you expected or wanted, doesn’t mean you aren’t making progress. Remember, progress with Lichen Sclerosus unfolds at many levels and should not only be measured by how your vulva feels. For example, progress may occur at the level of stress, mood, muscle tension, behaviors, etc. For instance, one big indicator of progress for me early on was breaking the habit of compulsively checking my vulva (read that post here).
However, I wasn’t in remission then and was still quite symptomatic. Nonetheless, this was progress and progress that deserves to be acknowledged and celebrated.
In fact, learning to ride the ups and downs of our disease – and really, life – is progress.
To conclude, the trajectory of your progress may not look the way you expected. However, this does not mean you aren’t making progress. In order to accept that progress isn’t linear, it can be helpful to have a realistic goal in mind as well as realistic expectations with respect to reaching that goal. Remember, my progress was all over the map, however, despite this, I still achieved remission and have been in remission for over a year and a half (and no symptoms since then). Thus, remission is totally possible, but you may need to take a few steps back in order to get there.
#TLLCTuesdayTip: Be gentle and meet yourself with compassion when trying to accept the fact that progress isn’t linear. Remember not every step back is a failure. Many times we need to take a step back in order to move forward.
The Grief Project is a collection of voices from people with Lichen Sclerosus across the globe, sharing their experiences and journey with grief. The purpose of this project is threefold. First, the goal is to create a space for others to safely share their experience with grief. Second, my hope is writing will be therapeutic, cathartic, and provide you with some important insights about yourself. Third, the purpose of The Grief Project is to normalize these types of discussions about Lichen Sclerosus and mental health.
You can contribute in a number of ways such as:
A) Writing your own piece and choosing your own images.
B) Writing your own piece but have me choose the images.
C) Doing a virtual interview with me and I would write out the interview and you choose pictures you’d like.
D) Doing a virtual interview with me and I would write out the interview and I’d choose the pictures.
If you would like to contribute, please reach out to me via one of the options below.
Whether you want to contribute to The Grief Project or you want to chat with me personally, you can contact me in the following ways:
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: lostlabiachronicles@gmail.com
Virtual Meetups
Do you want more support in your journey with Lichen Sclerosus? Consider joining our Lichen Sclerosus Support Virtual Meetups. We meet bi-weekly, every other Saturday from 2-4 and 7-9 pm EST. These meetups are a safe space for you to share your story, cry, celebrate, vent, ask questions, and be a part of a community of support. Click the button below to sign up!
*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.
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