Every October since I joined the Chrysalis family, I have been asked to write for our blog and share pieces of my journey with breast cancer to promote awareness and early detection. This year, however, it was my idea to write for our blog because I wanted to share a side of surviving cancer that no one talks about and before now, I was not ready to share.
In 2012, at the age of 31, I sat across from my doctor and heard the words I would never forget “you have breast cancer”. The word “Cancer” carries so much weight in itself that it was hard for me in that moment to see beyond it. When I could finally process what was happening, I realized I had a choice, I could either curl up in a ball and fall fast into depression or I could pull myself together and make cancer wish it never knew me. I chose to pull myself together and fight, and that is exactly what I did. I cannot tell you that it was always easy, I had many bumps in the road, nevertheless, after countless doctor appointments and 12 surgeries, I am cancer free and have been given the title “Survivor”.
Almost immediately, after my cancer diagnosis and my initial surgeries were complete, I started speaking and volunteering at as many breast cancer events as possible. Although I had always participated with these charities, I felt a new pressure to pay it forward. I thought I owed it to all of the others battling cancer since I had it so much easier. I also began to experience insomnia and anxiety symptoms and found myself obsessively relieving the day I was diagnosed. I would think about that day step by step every single day. I thought about it while I was driving to work and while I was on vacation with my family. Despite the persistence of the thoughts and memories, I never addressed these issues or thoughts with any of my doctors. I assumed it was normal. I told myself that since my cancer was caught early and I survived I should just deal with these issues. After all, I did not have nearly as bad as other individuals diagnosed with later stages of cancer so I did not have the right to complain. I should just be grateful.
A few years after my diagnosis I received a phone call that Toni, one of my closest friends and biggest support systems during my cancer battle was diagnosed with late stage ovarian cancer and it was terminal. I remember immediately breaking down, not being able to catch my breath and saying, “She is too good, it should be me”. Toni fought an incredibly brave battle and when she could fight no more, gained her wings. After she passed the thought of “it should have been me” turned in to “why wasn’t it me” and that thought was not just directed at my friend’s battle but at anyone that did not survive their cancer battle.
I was no longer experiencing just insomnia and what was became debilitating anxiety, I became completely disconnected from friends and family. I would go through the motions, but I felt completely empty inside. I was not just reliving my diagnosis at this point; I was constantly questioning why I had it so easy and why did I get to live. Any time I would express these feelings to family or friends they would be minimized or dismissed. I would be told that I “shouldn’t feel that way.” I eventually decided I would just keep these feelings and thoughts to myself.
I would do my best to hide these feelings and play the part around others like I knew I should, but I was not ok. I began feeling compelled to follow stories on social media about families documenting their terminal cancer journeys, most of these being about children. I felt like it was my responsibility to show these families support during what was the worst time in their lives. I was really punishing myself for not suffering enough and surviving.
One day my friend asked me why I was constantly following “those sad stories” and I told her “I needed to experience the pain, difficulties, and loss other cancer patients not as lucky as me go through to actually be worthy enough to be a “real” survivor. I will NEVER forget the look on her face after that response, and that is the moment I knew I needed to get this figured out. I began seeing a therapist to figure out why I was no longer myself and why I felt crazy. What I learned was that I in fact was not crazy and that all the emotions and symptoms I had been experiencing were actually Cancer-related survivor guilt.
It may come as a surprise to those who have not experienced cancer, to learn that many of us suffer a sense of “survivor guilt”. Cancer-related survivor guilt is a complex, multi-faceted emotion. Not only can we feel guilt at “surviving” when others have not, but we may also feel that because we have been diagnosed with an earlier stage disease, or that we didn’t have to go through chemotherapy we are somehow less “deserving” of sympathy.
Luckily the stigma surrounding survivor’s guilt seems to be lifting, thanks to a nationwide shift in the way the public thinks and speaks about mental health in general. More Mental health professionals are starting to speak on this topic and oncology professionals are starting to recognize it so if their patients are suffering with this guilt, they can offer them resources and support.
For me, knowing that survivor’s guilt is not only real, but exists in many emotional forms was my first step in overcoming it. I have learned that when it comes to navigating life after cancer, it is important to realize that no two paths are the same. Every cancer journey is different, and I need to be grateful for the good things I have. If I have an off day, instead of dismissing or being ashamed of my feelings, I need to acknowledge and accept them.
I chose to share this aspect of my cancer journey in hopes anyone else that may be experiencing these thoughts and feelings can rest assured that what you are experiencing is real and you can’t always “just get over it.” That it is ok to get the help and support you need. I want survivors coping with these emotions to know that you are loved, you do not need to justify your existence and you deserve to be here.