We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Hope Aguilar.
When I was in my second month of treatment for late-stage ovarian cancer I read a friend’s post on Facebook about her friend passing away from cancer after just six weeks of being diagnosed. I was so sad about this news and about the fact that I had made it past six weeks and she hadn't. Then when I was a few months out from finishing chemotherapy and back to teaching in Saudi Arabia, I found out that the woman who helped me when I was just starting treatment had passed from her five-year battle with ovarian cancer. I was again saddened, but even more so than before. This woman was just fifty years old and had a husband and children - she had so much life ahead of her. And that’s when survivor’s guilt first truly hit me.
I didn’t know that "survivor's guilt" was the name of what I was feeling. I just knew that a part of me was torn. Torn between being so very grateful that I had made it (even though it hadn’t been very long) and anguished over knowing that I still here and this woman wasn’t. I did my best to not let the guilt bring me down too much: I kept moving forward, living each day to the fullest, and staying positive through all the post-chemotherapy problems I had. But every once in awhile I would get that feeling of sorrow from the guilt that I survived and that so many others didn’t. I would read article after article about men, women, and/or children who lost their battle, and I would start to ask “why?" even more. Why them and not me?
I had no significant other in my life. I had no children who needed me. “So, why am I still here?” is what I would ask and think about. If I thought too long about it I would start to cry, and as I cried I would call out to God and ask Him why. The answer that I believe God gave me was that that even though I didn’t have a significant other and children, I had people who loved me and needed me in their lives. And I still had some purpose here on Earth.
Did survivor's guilt go away? No, and I don’t think it ever will - not completely. That said, something feels different each time that guilt pops up now. I don’t dwell on it. I remember those who love me. I think about all the ovarian-cancer awareness advocating I have done and will continue to do. I share my story in the hopes that other women will listen to their bodies thereby getting them to go to the doctor sooner rather than later. I share my story in the hopes that other survivors will share their stories too. Because when more people share their stories, more awareness will take place. And awareness is knowledge and knowledge is power.
For me, the way to survive survivor’s guilt is to live a life of purpose. To do more with giving back. And to remember that survivor’s guilt can rule you or you can rule it. I've chosen to rule it. I know it will come and it will go, but it doesn’t have to stay. Not unless I let it. And I don’t, I won’t.
Hope Aguilar is a teacher of the English language in Saudi Arabia, and the author of the book "HOPE through Cancer." The native Texan is also a veteran of the U.S. Navy and Army. She loves to advocate for ovarian cancer awareness, travel, write, jog, and spend time with friends and family.