The Scarlet Letter C –  Enduring the Blame and Stigma of Cervical Cancer Survivorship

I never thought I would be a cancer survivor at only 34. I was healthy, successful, and happy…never sick, never symptomatic. Yet, I sat across from my oncologist on that Spring day in 2007 and heard those unbelievable words “It’s cancer. And it’s invasive.” It was endocervical adenocarcinoma, or as we commonly call it cervical cancer. 11 years and two surgeries later, I would forever become identified as a survivor and went into action mode by learning as much as I could about my cancer type and what I could do to help others, through my story and education. I was eager to be heard.

 

And then the slut-shaming began.

 

I should first start out by saying that there are many in my life who are understanding, compassionate, and decent. They have been solid supporters of me, my cancer advocacy work, and listen when I talk about women’s health, something fundamental to healthy communities. I know it can be uncomfortable (I see you cringe when I start in on all-things-vagina), but we must let others know by example that it’s ok to talk about sexual health. It’s time to insist that we destigmatize sexual health across all genders. We’re not being taught enough about our bodies at early ages, let alone how to keep them safe. But for every kind, understanding person in my life there have been more that play the blame game. Who would have known that I would spend more than a decade defending my honor because of my cancer? I may as well emblazon a type of Scarlet Letter upon my chest…a vivid “C” to mark me as stigmatized for having THAT cancer.

We have a double-standard in America when it comes to talking about sexual health. And oddly enough I find this especially true in groups of women I’ve spoken with, in my role as friend and as national advocate. This is true even in circles that claim open-mindedness. For example, a close friend early after my diagnosis confided in me that she truly thought I got cervical cancer because I had been overly promiscuous; too slutty. And, I’ve had people tell me straight to my face that while they were sorry I got cancer, it was presumed to be directly related to my behavior, that I should have just “been more careful.” It means that there is a level of blame and culpability being placed on me…that my behavior directly resulted in my cancer diagnosis. Let me be perfectly clear…I did not cause or choose my cancer. The notion is barbaric. No one chooses cancer. Never. No one. Yet, people feel validated in the cause-and-effect thinking because we are taught that sex is a dirty, filthy business not talked about in polite society. Be liberated to have all the sex you want, just don’t talk about it and by all means don’t be the type of person to get an STD. I call b.s. on this.

 

Lori Stone on a Washington State ferry headed to the San Juan Islands. Lori spent 10+ years as a cancer advocate in Washington State before moving back to her home state of California.

Let’s break that down a little further. Because cervical cancer is most often caused by sexual transmission of Human Papillomavirus (or HPV, a virus ubiquitous to most sexually active adults), there tends to be a cognitive jump that assumes the patient got there through inordinate amounts of sexual frivolity, or at the very least rigorous unsafe sexual practices. I can see it in the faces of the people I tell, of strangers I meet, in people that ask me why I don’t have children, and even in friends and family that are too shy or embarrassed to ask questions. As an empathic person, I can feel the wheels turning. While most will never ask this of me directly…the question they seem to want to know is “did you have a lot of unprotected sex? And what does that say about ME?” And the silent answer is always the same, it simply doesn’t matter. You can be exposed to a virus with one sexual partner or many.

 

And where I am most dumbfounded by this reaction, other than the vast misinformation that lies within, is that it doesn’t happen with only one political or religious affiliation amongst women. Talking here in vast generalizations, I expected going into my women’s health advocacy work to face challenges talking about sex and sexual health with those who’s worldview doesn’t advocate for equal rights, reproductive freedom, sponsored health care, etc. But in fact, I have had judgmental and negative reactions to my cancer advocacy from women across the political spectrum. I’m most perplexed when I encounter judgement and misinformation from those positioned within a feminist worldview. Some of this lies embedded with skewed views on HPV vaccine safety, shaped largely by falsehoods and fear-mongering dangerously spread via the Internet. But most of it seems to fall on our inability to discuss women’s healthy without a preconceived position of politics. Women’s bodies, sexual health, and women’s rights have been highly politicized for generations–and exist across all cultures even today, simply by varying degrees. And I find lay discussions around cervical cancer fall smack in the middle of this tug-o-war; the right for modern sexual freedom at odds with deep-seeded perceptions and culture norms about women’s roles.

Lori Stone (right) with Tamika Felder, Chief Visionary/Founder of Cervivor (middle) and Deborah Arrindell, National Cervical Cancer Coalition (left), at the NCCC annual conference

While access to gynecologic testing and screening has created vast drops in cervical cancer rates in western countries over the last century, cervical cancer remains the second leading cause of death in women worldwide and we are seeing rates of HPV cancer rise in the US while HPV vaccination uptake remains low. When we have the means to prevent cancer and people aren’t getting the vaccine, we have to ask ourselves why. It points directly to continued stigmatization. When I ask people to consider the alarming facts about cervical cancer and HPV, I find myself navigating the waters of judgement across a kind of cancer morality meter. This must end if we are to see true change, changing hearts and minds to break beyond fear.

On International Women’s Day and beyond, to #PressforProgress we are called to reduce disparities in healthcare, to create local calls-to-action that protect access to healthcare, and empower women of all genders to make a commitment towards proactive sexual health.

 

Here’s where to start:

  • Support legislation that promotes reducing the barriers of access to healthcare for everyone and understand the disparities of cervical cancer diagnoses for women of color to promote better outreach for gynecologic health in underserved communities. 
  • Dispel myth and misinformation about HPV vaccine when you see it online or hear others talking. Learn the facts to reduce the fear. HPV vaccine is safe, effective, and best protects boys and girls from future HPV infection when given early, when the immune system works best and before sexual maturity.
  • See your own doctor regularly and get up to speed on screening guidelines…in general, remember Pap testing starts at age 21 and HPV testing starts at age 30. Some women can stop screening at age 65, but not all. Talk with your doctor about screening intervals at your next visit.
  • HPV cancers affect all genders. But unfortunately, there is no approved HPV testing today for men, which puts a unbalanced sexual health burden on women. Open up the conversations around this with your medical teams and have honest conversations with male partners.
  • If you haven’t been to see a gynecologist in some time, or you’ve never been, get an appointment scheduled. Take this message as a wake-up call to be proactive about your health. If you’re scared, you’re not alone–exams can feel embarrassing and invasive. Ask for help where needed.
  • If you can’t afford medical care, there are often free or low-cost screening programs in your communities for breast and cervical health. Check with your local Department of Health.
  • Reach out to your local Cervivor Ambassadors who are working for change in HPV cancer prevention at the local and national levels.
  • Have open, honest dialogs about sexual health, remembering that life itself is sexually transmitted and the only sexual history we truly know is our own. Eradicate the stigma to move us forward in eradicating disease.
Lori Stone (left) talking with fellow Cervivor Taylor Lumadue (middle) and Megan Herber (right), Health LA to Representative Doris Matsui (D-CA) in Washington D.C. for Cervivor Day on the Hill

I want us to stop the stigmatization of cervical cancer. No one deserves it and I owe it to the women I’ve watched die from this disease that the shaming stops now. We tell our stories, their stories, to be the change we wish to see.

I want to be in the last generation that sees women dying from preventable cervical disease. And we have it in our power to dramatically take control and protect young people from ever getting HPV cancers in the first place. Join us in the conversation at Cervivor.org.

 

Lori Stone is a cervical cancer survivor and Cervivor Ambassador from San Luis Obispo county, California. She is a creative coach, designer, writer, and for-now-retired corporate marketing consultant changing narratives for better living. Follow her at www.joyguild.com and www.cervivor.org/stories/lori.

An Advocacy Spark

From A Tiny Spark May Burst A Flame – Dante Alighieri

A few months ago I started planning for what would be my “coming out” party so to speak.  Kind of like a debutante coming out to society, I wanted the world to know that I had cervical cancer caused by HPV.  Wow that felt so good to type.  The event was planned for January during Cervical Cancer Awareness Month and the idea was simple, have a few close family and friends over to hear my story, watch the movie Someone You Love: The HPV Epidemic and answer any questions.  I had no idea how much of impact this event would have.
So let me rewind a little bit and tell you what brought me here and my “why”.  In 2009, I heard those three awful words, “you have cancer”.  I had cervical cancer and it was a result of HPV 16 and 18.  What is that you ask? HPV is the human papillomavirus and there are more than 100 types of HPV and just a little more than a handful are high risk or cancer-causing.  HPV 16 and 18 cause about 70% of cervical cancers.
When I was first told I had cervical cancer I had no idea what that meant.  I had no idea what HPV was.  More importantly, I didn’t know anyone who had or was going through what I was.  It was extremely lonely.  Not only could I not relate to others, I had family members who associated HPV with a stigma and told me things like it was because everyone sleeps around.  That hurt beyond imagination.  I was silent about HPV.  Someone I looked up to made me feel like I did something wrong.  But I didn’t, they were just ignorant.  At the time I did what I do best, I went to the bookstore to find anything that may help me.  8 years later, 1 LEEP, 2 cone biopsies, an infection that almost killed me, 11 lymph nodes removed, and a hysterectomy I have finally found my voice to tell my story, I discovered “my why”.  I have finally found the courage to talk about HPV.
That brings me to my event, my “coming out” so to speak.  There were about 15 people in total that included family, friends, and neighbors.  Most everyone there had children ranging from around age 7 to their early 20s.  To make the evening more special I was honored to have Tamika Felder, the founder of Cervivor there by my side; and I was honored to have Kelly there representing Team Jillian.  Jillian is a Cervivor sister we lost this past September and I love that her close friends and family honor her by continuing to talk about cervical cancer and the HPV vaccine.

I could not have asked for a better evening, we even had a teal cocktail made by the very awesome Justin who was sporting a teal shirt.  Before the start of the movie, I gathered everyone
around to make a few comments and tell my story.  It was the first time I did this to a group.  I was so nervous, but once I started talking it was so easy.   I believe it was said in Cervivor School, no one knows your story better than you.   My best hope for the evening was that I would tell my story and we would watch the movie.  My goal was getting me over the nerves hurdle with people I knew.  But wow my goal was exceeded.  At the end there were questions.  There was interest.  There were women who were ready to go back to the doctor.   Moms who wanted to share the information with other moms in our community, people who were happy their kids had the vaccine, but they didn’t understand at the time how important.  Knowing that I was able to reach someone with my story, for me this was most definitely a tiny spark that had lit a mighty flame.
January is Cervical Cancer Awareness Month – there is still time.  Are you ready to have your “coming out” and share your story?  Cervivor is a great place to share your story and it has an easy to follow format which can guide you.
— Cervivor Amassador Tina Vetreno
Read more about her story here: http://cervivor.org/stories/tina-2/