Be an Advocate on Your Terms

About a year or so after my treatment for cervical cancer I came upon a non-profit advocacy group named Cervivor. I started following them on social media and willingly shared my cervical cancer story to their website for them to publish. Since my diagnosis I had been looking for a way to use my story to help other women in some way. Cervivor looked like a great place to move forward in doing that.

And then I learned about Cervivor School, a weekend long event that helps cervical cancer survivors learn how to be better advocates as well as an opportunity to become part of an understanding and supportive community.

In the last two years I attended two Cervivor Schools. The first was in Louisville, Kentucky in 2016. It was exciting to have the chance to go after being selected to receive a scholarship from the organization. While learning valuable information about cervical cancer and HPV (human papillomavirus), I also met women who understood what I had gone through both physically and mentally from cancer. I headed home with a new found confidence in myself and my ability to have my story matter.

When the 2017 Cervivor School came around, I didn’t think I’d be able to attend due to the expense and knew I couldn’t apply for another scholarship after having received one the year before. But in the time since the last school, I’d been assisting the organization by proofreading and editing blog posts and other stories they’d been sent from other cervical cancer survivors. So I was offered the chance to attend Cervivor School in exchange for assisting with social media during the event. I accepted with even more excitement in my heart than the previous year.

So to Florida I went. I was given the passwords to their Facebook, Twitter and Instagram accounts as they trusted me to post on their behalf for the weekend. During that long weekend I didn’t just work. I was invited to sit on a panel and talk about how I coped during my cancer diagnosis and treatment, which was normally way out of my comfort zone. But I was honored to be asked, so I sucked it up and sat up there with other survivors I’d come to know and respect. I made even more friends that weekend and left Florida feeling a heightened sense of community and friendship.

About two months later a post was made in a private group for Cervivor advocates about some dishonesty that was potentially happening with one of the young ladies who’d been part of the group. It was someone I’d spoken to personally a few times since meeting her, and instead of believing everything that was said, I confronted her directly and was given an explanation I was comfortable with. Maybe I was wrong and lies were told, or maybe I was right, but she remained on my social media friends lists even when we hadn’t spoken since October of last year (I don’t feel the need to go through my friends list often).

Fast forward to last week when I thought things were status quo. New allegations were made that shocked and surprised me. But I guess I didn’t move fast enough after they were suggested late one night. I didn’t unfriend or unfollow someone I hadn’t talked with in months and the next morning I was banished. The word banished may sound extreme, but it’s exactly how it felt. Removed from the private group for Cervivor advocates. Blocked from the organization founder’s personal page, the woman who only five months earlier entrusted me with her organization’s social media accounts and website text. And unfriended by women I had once respected and considered friends from what appeared to be a loving community I’d been part of for two years.

No discussion.

No questions asked.

Just thrown away as though my time with Cervivor was meaningless.

I guess someone assumed I was offering information to someone who was a problem. Or maybe I wasn’t fundraising enough or posting about Cervivor enough on social media during the busy holiday months or during my husband’s recent surgery. Either way, to assume anything without talking directly to me feels like a disgraceful misuse of power in what is meant to not only be an advocacy group, but also a loving community for CANCER SURVIVORS. I later found I wasn’t the only one who was pushed out.

But, live and learn, as my mother says. The explanation I’ve written above is for anyone who tossed me aside already without question and for those who are wondering what happened (something I’m still unsure of). Isn’t it good to always know more than one side?

But this post isn’t to tear people away from Cervivor or to tell other cervical cancer survivors not to get involved with the organization. You can find that elsewhere. Though I’m currently sad and feeling mistreated and underappreciated, I’m still happy I was part of Cervivor. Through Cervivor I met some wonderful people who I’m proud to call my friends. And I learned valuable information about cervical cancer, HPV, advocacy and health. And now, no longer part of the organization for reasons still unbeknownst to me, my experience taught me you can’t trust everyone and that friends aren’t friends if they consider you so easily disposable. And lastly, I learned I don’t need a big organization to follow in order to be an advocate and help others. I only need to be me.

So when it comes down to it, the lesson learned is that you can be an amazing advocate as part of a large group or just as yourself. But if you’re part of a group, remember to be true to yourself no matter where the majority may lie. Remember to always be you and to respect other cancer survivors with the understanding of what they’ve already endured, or still are.

Best of luck to all advocates. Make your story matter, if even to one person. You matter.


One thought on “Be an Advocate on Your Terms

  1. Ms. Amanda – thank you for sharing this terrible experience – I know the feeling of being tossed aside – but – we as a person that have had the experience of having cancer – that have fought the battle – and we are still striving daily to live and be healthy – we have to stand tall within our block and continue to be an advocate for all ladies that we met everywhere – this is really sad that this happen to you – and to other ladies -without an explanation – but – I guess that is their way of doing things – you are still my friend and I love you – and I am so happy that we met and that you are and will continue to support each other in any way that we can……..


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