Why I’m a cervical cancer advocate

ericaSometimes life takes you in directions you never expected. I have never thought of myself as a writer. I never set out to be an inspiration for people or even to be an advocate for a cause. I also never planned to hear the words, “You have cancer.”

Life is what happens while you are busy making other plans. I started out blogging for very selfish reasons: I wanted to be able to update my family and friends without having to call each person individually. I wanted a way to document what was happening to me, and it was honestly therapeutic to get all my feelings out in writing.

I didn’t set out to make a difference, be an inspiration to others, or even to create cervical cancer awareness. As my cancer journey evolved, I was contacted by a variety of individuals and there was one common connection: they had all seen and were touched by my blog. It was after these individuals started contacting me that I realized my blogging wasn’t just for me, or even just for people who knew me. It was a platform to inspire others and spread awareness about cervical cancer and HPV.

Today, advocacy is an important part of my life. I have been fortunate enough to work with Roche to develop a video chronicling my story which has been used to reach out to doctors across the state of Indiana to express the importance of screening for HPV. Through Cervivor, I have had the opportunity to join a group of women who share my passion for advocacy. I had the fabulous experience of attending Cervivor School San Diego to learn more about how to effectively advocate for awareness and how to share my story in the most impactful way.

Cervivor School ignited a flame for advocacy. Working along with these passionate women, there are several great things in the works. We are working to do outreach at a variety of colleges to help educate students and professionals about HPV and cervical cancer, organizing more opportunities for Cervivor schools, and developing a fabulous campaign for January, which is Cervical Cancer Awareness month. So, why is advocacy important? Well, for starters, did you know that it is possible to completely eradicate cervical cancer? Let that sink in for a minute.

According to the American Cancer Society, it is estimated that there will be 12,900 new cases of cervical cancer diagnosed in 2015 and about 4,100 women will die from cervical cancer in 2015 alone! That is more than 11 women per day dying from a cancer that is preventable! I cannot imagine a better reason to advocate.

We could end this cancer! We could end these deaths! Advocacy is important, no matter how big or small. I have embraced my passion for advocacy. Afterall, if everyone just waited for someone else to do it, it would never get done.

Cervivor Erica

Why October is the Worst

We didn’t get this post from Ambassador Danielle until very late October, and, because the National Race to End Women’s Cancer last week, we needed to write about that. It doesn’t make this post any less important. We are so proud and honored to have people like Danielle writing about and fighting for Cervivor. – Tamika

Photo by Greg McGoonPart of me hates to be writing this. Mostly because of the nonsensical war on women’s healthcare that the conservative right is waging once again via their attacks on Planned Parenthood. The last thing I want to do is make it sound like I’m trying to divide camps within the side for which I fight. But it’s important that I say this.

October sucks. It really does.

Within all its leaf changing, pumpkin-spiced glory, it is also 31 days of making people I care about feel discouraged.

Why? Because September is Gynecological Cancer Awareness Month and I would bet that 75 percent of the people reading this sentence had no idea that even existed. But everyone knows about October. Like my dad who puts his Christmas tree out the 1st of November, October pink starts to seep in sometime around the end of August.

You unfortunately can’t wrap the “below the belt” cancers in a neat pink ribbon. There’s uterine, ovarian and cervical, among others, and some 90,000 women are diagnosed every year. And to really fight for them? To raise even one tenth of the money that breast cancer awareness does? It means we have to talk about it. Really talk about it. And that is the last thing people want to do. Because it’s uncomfortable. Because it conjures up very specific imagery. Breast cancer survivors and battlers are to be revered by the media and society. Women with cancer in and around their reproductive system? Let’s sweep that quietly under the rug.

Why can’t my friend, a 13-year cervical cancer survivor who had a full hysterectomy at the age of 25 be commended for her struggle? Or my friend’s mother who beat unlikely odds for ovarian cancer not look embarrassed every time the subject comes up? For their fight to be heard in a sea of news outlets that don’t want to publish their stories in favor of another breast cancer advocate? These are the same outlets that refused to highlight the HPV connection to Farah Fawcett’s anal cancer because we can’t possibly discuss how people in the world might be having (gasp!) unprotected anal sex like many see featured on sites such as www.nu-bay.com so often.

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But what can be done about this stigma? One particular media outlet has repeatedly reinforced this negative stigma with articles like “The Silent Shame of HPV,” containing anonymous stories about coping with it. Even worse, this more recent and incredibly tone deaf sexist piece “Iron Maiden Singer Vanquishes Sex Cancer.”

Recently xoJane published a fantastic article with The STD Project interviewing people who decided not to remain anonymous and instead confidently and intelligently spoke out about living with herpes — one of the most traditionally stigmatized health conditions of all. So you’re telling me that THE DAILY BEAST couldn’t find ONE person to speak to about HPV without condition of anonymity? I call bullshit. That and pure old fashioned laziness on the part of the writers. Because if you do even the lightest of Google searches you will find the Foundation for Women’s Cancer, ASHA, and Cervivor, all organizations with women willing to put a name and a face to a disease that the media would prefer to overlook. I emailed THE DAILY BEAST back when that first article published, calling them out on their negligence and their response was to say that people don’t want to talk about it because they are embarrassed. Dear editors, a title like “The Silent Shame of HPV” doesn’t help matter. You’re also incorrect because I’m not a journalist or a reporter and I can name 10 people off the top of my head who will talk about it because I’ve read their personal blogs online. Many people who have often enjoyed videos from TubeV Sex while also having sex and contracting the HPV making them brave enough to speak out about it but they won’t highlight those who are talking about the struggle.

pinktober1-44814_640x320But I didn’t write this in the hopes of starting a “boo to breast cancer” campaign. (Someone else must have thought of that name for a 5K by now right?) I just find all the hoopla over one disease so limiting and overall not the best course of action. A brave talented woman who best sums up some of the trivialization that Pinktober and pinkwashing has brought to the breast cancer movement is writer and breast cancer survivor Diane Mapes. She has from diagnosis to recovery mapped out a very honest and decidedly un-pink description of what she has endured but it hasn’t prevented her from covering and reporting on all kinds of health issues in her informative and forthright manner. Her attitude is one from which many other journalists could learn.

My point is that the benefit that breast cancer receives from all the October attention is confirmation that people are listening. They have a massive rapt audience thrilled to root for them and raise them up and make them feel good about their battle. Any other organization trying to raise funds for medical research and educational awareness would kill for even a small percentage of the breast cancer reach.

Ovarian cancer accounts for more death than any other cancer of the female reproductive system and cervical cancer is, for the most part, preventable, so why all the secrecy? It’s 2015. Aren’t there enough media outlets for more people to share their stories for the greater good?

I’m glad October is over because I’ve learned to dread October every year. It’s a reminder of the world we live in, and that it abides by a news cycle that would rather regurgitate the same story over and over rather than truly educate and move forward. That we won’t collectively strive for a better discussion about our overall health because certain things are difficult to discuss. It’s better to leave them unsaid and stick to talking about boobs or nothing at all. Or, we choose to not give a significant platform to women who have gathered up the courage to shout their stories and we stand there, smile with false sympathy and ask, “But do you have a celebrity spokesperson like Angelina? No? Oh then your story? Your pain? It’s not clickable.”

I’m giving you a whole year to think about this. Next October? And all year round? I’m asking you to think outside the bra. Don’t pat yourself on the back for praising a woman for her strength in her health struggles if you’re not taking into account the whole woman.

After all the primary fight for feminism has always been getting the world to see women as more than just a pair of tits.

Ambassador Danielle