Hey! Welcome to today’s episode. I’m so glad you are with us! Today is going to be a little different. In honor of World Voice Day, that is, a nationwide event dedicated to celebrating the importance/power of the voice in our lives, I have decided to use my voice to discuss the breast cancer awareness movement. Specifically, I trace the history of this grassroots movement from the 1960s to today and highlight what we can learn from them in raising awareness for Lichen Sclerosus.
Please read until the end for some exciting news about the Lichen Sclerosus Support Network and how YOU can use your voice to help us out!
Lichen Sclerosus is a Marginalized Disease
Here on the Lichen Sclerosus Podcast, I talk about LS a lot! I mean, I have a whole podcast dedicated solely to this topic. However, LS is a marginalized disease that many medical and non-medical professionals are completely unaware of. Heck, I didn’t know about it until I was diagnosed with it.
Breast Cancer: A Formerly Unknown Disease
LS isn’t special. That is, it isn’t the only disease considered rare, marginalized, and commonly misdiagnosed/undiagnosed. There are a plethora of rare diseases out there, meriting attention, research, and awareness. Importantly, some diseases we think of as being well known today were once upon a time considered unknown, rare, and marginalized.
For example, nowadays, everyone has heard of breast cancer. However, back in the 1960s, it was not being spoken about. People weren’t checking their breasts because many didn’t know about breast cancer and the importance of checking your breasts. Breast cancer awareness increased when people with breast cancer used their voices to speak out and share their stories.
The Times magazine wrote an article about how breast cancer awareness grew into the movement it is today. In this article, they state:
“Breast cancer was an unspeakable condition that women experienced privately and silently, with shame rather than social support”
Driving Momentum: The Development of the Breast Cancer Awareness Movement
Breast cancer was relatively unknown in the 60s; this is in large part due to shame and stigma. However, this started to change in the 1970s when people with breast cancer began to speak out on their experiences and thus raising awareness. This began with them telling their stories locally; remember, this is the 1970s, and the internet was not yet a thing. Thus, these women would go door to door, handing out pamphlets and flyers and informing their neighbors about this disease. They sought donations from their local communities and pressed local newspapers to publish pieces about breast cancer.
The Betty Ford Flip: A Key Moment for Breast Cancer Awareness
Over time, the movement built up momentum. Then big names and influencers joined the movement. A pivotal moment for the breast cancer awareness movement occurred when first lady Betty Ford gave a press conference in 1974 where she told the whole world about her mastectomy. According to The Times magazine:
“As a result, millions of women examined themselves and scheduled screenings with their doctors, which led to a spike in reported incidents of breast cancer known as the ‘Betty Ford Flip’”.
Just imagine if an influencer came out on Instagram saying, “I have Lichen Sclerosus. This is what it means. This is how to check your vulva to see if you have it and how to seek help”. This would be so big in the fight to normalize discussions about our genitals and diseases that affect our genitals as well as raise awareness about Lichen Sclerosus.
The Birth of the National Alliance of Breast Cancer and National Breast Cancer Coalition
From 1974-1986, breast cancer awareness groups started popping up everywhere. In 1986, a breast cancer survivor and advocate named Rose Kushner saw all these groups and realized they weren’t making much noise. Consequently, she organized all of them and formed the National Alliance of Breast Cancer Organizations. She took their collective voices and made them heard. She took their little squeaks and turned it into a massive yell!
Moreover, during this time, more women were getting elected in congress and they started pushing breast cancer awareness. Between the National Alliance of Breast Cancer and these elected officials pushing for policy change and awareness, this was the first step in the door of the government. They made themselves known, and in 1991, different advocacy groups formed together to create the National Breast Cancer Coalition.
According to the journal of women’s health, their goal was, “To increase research funding for breast cancer, access to health for all women, and influence of activist and breast cancer decision making”.
In sum, they wanted funding, better healthcare, and better quality research.
The Importance of Uniting Voices for Breast Cancer Awareness
It took over 30 years, but the breast cancer awareness movement was able to lobby the government and, consequently, received hundreds of millions of dollars for research. They have been able to form collaborative research teams from different fields to look at breast cancer from different angles. And, importantly, they have saved women’s lives!
This fundamental shift occurred because of outspoken individuals who advocated for awareness and change. Using their voice was critical for the success of this movement.
The Journal for Women’s Health stated:
“The transdisciplinary model exists to the cumulation of efforts by passionate women impacted by breast cancer who were never satisfied with the status quo. They gave a voice to the silent disease and continue to have a voice in the ongoing quest to eradicate breast cancer”.
They were relentless and wouldn’t be silenced. Breast cancer awareness grew from the voices of individuals with cancer to community support groups to political organizations pushing for a cure. It moved from a small grassroots project to a widespread network of professional advocacy.
Lessons from the Breast Cancer Awareness Movement
Smash the Shame and Stigma
Breast cancer wasn’t given much attention because of the region of the body it affects, namely, the breasts. Accordingly, there was a lot of shame and stigma around a breast cancer diagnosis, and thus many were not speaking out about it.
Similarly, because Lichen Sclerosus affects the genitals, there is a lot of shame and stigma surrounding this disease as well which is likely contributing to the fact that it isn’t well-known. Accordingly, many LS warriors suffer in silence and fear speaking out.
And I get it. Trust me, I get it. A couple of months ago, you couldn’t have paid me to tell someone I had Lichen Sclerosus. I hid it from my husband, my family, and my friends. And that, unfortunately, is why most people have never heard about Lichen Sclerosus. Because we are not talking about it. And if no one knows what it is, then we don’t know what warning signs to look out for and we can’t advocate for ourselves to our full potential.
Why the Shame and Stigma Must Go
This is why my friend Clare has vulvar cancer (vulval cancer awareness UK – link in resources), in addition to many others with vulvar cancer, because they didn’t get a proper diagnosis in time. That is, when Lichen Sclerosus goes undiagnosed and untreated for years, it has the potential to turn into vulvar cancer. This is why many find themselves battling vulvar cancer.
This needs to stop!
It is critical to speak out about this disease and raise awareness. We need to normalize discussions about our genitals and the health of our genitals. Our body is nothing to be ashamed of. Whether there is a disease in our breasts or our vulvas or not, we are still beautiful; we are still worth it. We must smash the stigma around our genitals to improve the quality of care and our lives. Because really, we have absolutely nothing to be ashamed of!
Let’s Raise Our Collective Voices
It’s important to remember the breast cancer awareness movement started small, with just a few strong and persistent voices. And they didn’t have the internet back then either. In 2020, we have the internet at the tip of our fingers!
Think about how powerful this is. It has never been easier to spread information and raise awareness. Furthermore, consider how much wider your reach is through social media. A post can reach international eyes within seconds!
The Power of Social Media for Lichen Sclerosus Awareness
For example, you might create a post on Instagram with the hashtag #lichensclerosusawareness.
That post can be seen by people around the world, who in turn might share your post to their stories, creating even more visibility.
You can reach hundreds and potentially thousands by using social media to drive awareness about Lichen Sclerosus through various social media platforms such as Facebook, Twitter, Instagram, Tik Tok, etc.
And if you aren’t ready to talk about Lichen Sclerosus and or share your story, that is completely OK. This is your journey, and you need to open up at your own pace when it feels right for you.
However, if you do want to contribute to raising awareness but don’t want your name associated with posts, you still have options to contribute to this collective movement. For example, you can create a dummy account and post images, infographics, think pieces, etc. Or you can record yourself sharing our story and send it to me; I’ll play it on the podcast.
Don’t want your literal voice heard? No problem! Email me your story and I’ll share it on the website or read it on the podcast. You can still partake in the movement and contribute to raising awareness for Lichen Sclerosus.
Exciting News for Lichen Sclerosus Awareness
Thus, inspired by the breast cancer awareness movement, the Lichen Sclerosus Support Network has some news!
We are super excited to announce we are turning the Lichen Sclerosus Support Network into an actual non-profit organization that will raise awareness, provide support, and share information and education for Lichen Sclerosus. The purpose of our organization will be to prevent the negative emotional and mental health effects that can come with a Lichen Sclerosus Diagnosis through any means necessary!
Our goals/vision for the non-profit organization
Support Groups run by Trained Specialists
First, we will host support groups run by peer-supported specialists. We will pay for them to be certified to run these support groups. These specialists will be trained, certified, there will be continuous education and they will be virtual so individuals with LS around the world can join. Further, we hope to one day be able to facilitate these support groups in different languages.
Second, we will also have the LS warriors, a support group off of social media which is like a mini-LS family for extra compassion and care throughout your LS journey. We check in with each other daily to help with the mental health aspect of an LS diagnosis.
Scholarships and Grants
Third, as we grow and raise more funds, our next phase is scholarships and grants for individuals who cannot afford their steroids, medication, surgeries, and doctor visits. There are many with LS out there right now who can’t afford their steroids, and this is critical because when LS goes untreated for a long period of time, the LS can potentially turn into vulvar cancer. There are individuals out there in excruciating pain that can only be alleviated via surgery, but they have to choose between food and a roof over their head for their family or surgery.
Secure Funding for Research
Finally, the last stage is funding for research. We need to lobby our government and get the money to fund the research for more treatments.
Help Us Raise Awareness for Lichen Sclerosus as Others Did for Breast Cancer Awareness
This is just the beginning. Like the breast cancer awareness movement, we too will grow from a small grassroots movement into an international nonprofit organization!
Please consider helping in any way you can. Know that you can help in a multitude of ways, including but not limited to:
- Share this post with friends and family.
- Do you have LS? Tell your doctors and healthcare team about us and/or tell your support groups about us!
- Follow me @lichensclerosussupportnetwork on Instagram and Facebook and share our posts and updates.
- Volunteer! Do you have a background in medical, legal, accounting, marketing, non-profit work, etc., and have time to help with the project? Reach out to us via email email@example.com if you have time to volunteer!
- Have you started a nonprofit before? Share your tips and advice with us, email us at firstname.lastname@example.org.
- Follow Lichen Sclerosus Support Network on FB and IG.
In sum, we can reach the level that breast cancer awareness did for Lichen Sclerosus. We can get into government lobbies, we can secure funding and better research, we can improve the quality of care and treatment, and finally, we can help save lives. But we need to use our voice!
In sum, how will you contribute to raising awareness? How will you raise your voice? Do you want to be on the podcast and share your story? Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.
Donate here: https://fundly.com/lichen-sclerosus-support-network#
Nonprofit details/volunteer information: http://lssupport.net/nonprofit
Searchable LS directory: www.lssupport.net/providers
Lichen Sclerosus Support Network Facebook Page: https://www.facebook.com/lichensclerosussupportnetwork
Furthermore, don't forget to follow Clare. https://www.instagram.com/vulvalcancerukawareness/