The Reluctant Advocate
When I was diagnosed with cervical cancer at the age of 25, over a decade ago, I could never have imagined my life now. In truth, initially, I didn't know if I would survive and then as time went by my thoughts went to what my quality of life would be post treatment — both physically and mentally.
Here is the cold hard truth — for most people cancer will always be a part of your life — in some way shape or form. Whether it is the countless follow-up appointments or the many well-meaning questions like, “are you okay?” from friends and loved ones. It’s ironic that I spend much of my life today advocating for cancer prevention and running the volunteer-based group cervivor.org, because all I wanted to do was go back to my life before cancer. I wanted to pick up the pieces of my life and go right back where I was before cancer. But, that didn’t happen. In fact, it was extremely hard to get to get back to my pre-cancer self. I was constantly fatigued and my body just wasn’t the same, and that’s where the term that I dislike comes in, “new normal” — it’s new, but it’s anything but normal. So, I began learning this “Tamika” post cancer. Sure there is a lot of “pre-cancer Tamika” there too, but it became of matter of finding my balance or “new normal.”
Once I realized (and accepted) that cancer was going to be this time consuming, emotionally all-encompassing thing in my life, the easier it was for me. I started living my life beyond my cancer diagnosis. That meant putting it behind me and never looking back. That is until I understood that cervical cancer is one of the only cancers (at the time) that something could be done about. I knew I could use my voice and story to make a difference. Before cancer, my life was consumed with just that — storytelling. As a television producer it was my job to shed light on not only individual stories, but those stories that make news and keep people focused. Seemed easy, right? Wrong. When I started my organization in
2005 — before there was even an HPV test or HPV vaccine — it was incredibly hard to get women to share their stories. They didn’t want to be labeled; in truth that stigma is still there, but I’m proud to say we have worked really hard to get women sharing their “cervivor” stories in order to stop the stigma and prevent cervical cancer deaths.
I think when you are in the midst of making a difference as an advocate, it is sometimes hard to see the ripple effect. Change can be very slow, but I know it is possible and I see it every single day through the work we do at Cervivor. I remember the first time I saw the someone from around the globe refer to themselves as a “Cervivor” (via social media). I knew it then and I really know it now, that together we can make a difference. That we speak for those that no longer have voices. It’s what I keep with me when I feel like I’m in a fight I can’t win. It’s what I keep with me when I feel like I should just throw in the towel and enjoy my life beyond my cancer. But, as was the case before my cancer diagnosis; I’m just not built to quit. So, that’s how I live my life beyond my cancer, by creating a world that I know can exist — a world free of HPV-related cancers.
Here are my top three tips for transitioning from cancer survivor to cancer advocate:
People want to help but they can’t provide you with the kind of help you need unless you speak up. So ask for what you need.
After a cancer diagnosis you may find yourself having a hard time coping on how to live outside the cancer bubble. Create a plan of your life beyond your cancer. Keep it handy. Refer to it often and live your life. It will be scary and you will think that the cancer will return and it might, but right now it’s about living in the moment, so live your life! It’s okay to take “cancer community” breaks. Just find a balance.
Give back! It is so fulfilling to give back. There are lots of great organizations who need your support and voice. Especially, the smaller grassroots organizations. If there is a need that would have made your cancer experience easier, and it hasn’t yet be created, seek to create it or share with others who can. Advocacy is about taking “what currently is” and creating “what should be”. It doesn't matter if you give a little time or a lot. Just make a difference.
Tamika Felder is a global cancer advocate and “Cervivor”. She is the author of the soon to be released, “Seriously, What Are You Waiting For? 13 Actions To Live Your Life And Achieve the Ultimate Comeback”. She’s based in Maryland, but spends most of her time on planes traveling the world to do her part to prevent cervical cancer. Connect with her on www.tamikafelder.com