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Why I Struggle to Identify as a Survivor

Why I Struggle to Identify as a Survivor

Survivor.

What makes someone a survivor? Is it merely the act of surviving an event?

According to The Oxford Dictionary, it is exactly that.

More specifically, a survivor is a person who survives, especially a person remaining alive after an event in which others have died. By definition, I am a survivor. So why do I sometimes feel like I’m not?

I have a difficult relationship with the word survivor, especially as it relates to having cancer.

I was diagnosed with cancer, melanoma to be exact, in January of 2015. I was lucky (if anyone with cancer can ever really be called lucky). We caught the cancer very early so, although it was growing rapidly, my oncologist was able to remove it all during surgery. There were some concerns about the possibility of cancer spreading to my lymph nodes due to the rate of growth but those tests came back all clear. One really long day of lymph node tracing, WLE (wide local excision) of the melanoma, lymph node removal and biopsy and I was cancer-free (at least at that time).

So again, I ask myself, why do I struggle with identifying as a survivor?

Maybe it has to do with the way people react to my form of cancer. When people find out I had melanoma (even though it’s now been three times), it usually goes one of two ways: they either are genuinely concerned and ask if I’m okay now or they respond with, “Oh, it was just skin cancer. My (insert friend, uncle, neighbor, second cousin’s first-grade pen pal here) had that too.” Many people hear that it was skin cancer and dismiss it as though it wasn’t a real cancer.

I have heard from many others with chronic illnesses or those who have experienced trauma that they feel this too.

When our illness or trauma isn’t visible or the effects of our treatment doesn’t leave a physical reminder, it can feel like our experiences are diminished or dismissed altogether. We feel like imposters who have to prove we belong; that our trauma is real, too.

If you’ve ever felt this way, I see you. I believe you. Your story matters too.

Maybe it’s because there are so many days where I still feel like a cancer patient.

Although my cancer is gone, I have regular quarterly skin checks with a dermatologist specializing in melanoma. After 5 years with no new melanomas, I would be able to progress to annual appointments. This was a date I marked on my calendar and planned to celebrate!

But at my first skin check, my doctor found more irregular moles that needed to be removed and biopsied.

Since then, I’ve had 18 biopsies and eight surgeries.

In six years, I’ve only had two skin checks where nothing needed to be removed or biopsied. I’ve had pre-cancerous moles removed from both breasts, my stomach, and my back.

It’s hard not to feel like a cancer patient when the treatment count rises and the anxiety increases.

In talking with many others who have experienced trauma, life after active treatment is even more difficult. We’ve spent so much time focusing on physical healing that often the mental and emotional aspects aren’t prioritized during treatment. We believe we are working to return to life as normal. But our old version of normal will never exist.

Whether you’re a survivor of severe illness, sexual assault, physical abuse, a traumatic accident or any other life-altering event, we are irrevocably changed. Survival often means finding a new “normal” and having to rediscover who we are post-trauma.

Maybe it’s because I have visual reminders that my cancer journey is a continuous one. Even my precancerous moles require a procedure that leaves scars behind. One time, I even had a reaction to my stitches after having a precancerous mole removed. My skin was so irritated from the sutures that the incision wasn’t healing and ended up splitting open in the middle. Five years later, you can still see every line from where the stitches were.

In addition to my “perma-stitches”, I have a scar on the right side of my neck, a significant one on my right shoulder, two on my left shoulder that required a shoulder reconstruction, one under my right arm, two on my stomach, two on my back, two on my right breast and one on my left breast. 

Some scars are visible.

A burn on your face. A disfiguring scar. An inoperable tumor that protrudes from your body. An amputated limb. The physical evidence from self-harm. In a world where we are surrounded by photoshopped images, retouched pictures and Instagram filters, how do we expect survivors to accept their physical changes, let alone embrace them? 

Or maybe it’s just because I feel helpless.

I wear long sleeves whenever possible, I wear sunscreen like moisturizer and I have hats for every type of weather you can conceive of. There is no medical explanation for why my body continues to grow and develop dangerous moles. I have developed anxiety around doctor’s visits that is so severe, more often than not, I start crying when my doctor enters the room. One time I cried for an entire week before my upcoming appointment. I was sure that my cancer had returned and I was dying.

I didn’t feel like a survivor; I felt like a prisoner. I had been cancer-free for four years but I still felt trapped, like a victim of my own body. I still feel this way today.

Trauma traps us. Maybe it’s feeling unsafe in your own body after assault or abuse. Maybe it’s feeling like your own mind is haunting you with post-traumatic responses. Even depression, anxiety and other forms of mental illness can leave us feeling unsafe in our own skin. We feel like a prisoner of our experiences, our thoughts and our bodies.

Yet, maybe it’s all of these things that truly makes us survivors.

To me, survivors are strong and brave.

They fight no matter what and don’t give up.

I share my story in the hopes that people will recognize that melanoma, skin cancer, is cancer. I also share my story for those who feel unseen and unheard as they deal with and heal from their own invisible illnesses and traumatic experiences. It hurts me to think that calling myself a survivor could be perceived as diminishing someone else’s fight, strength and bravery.

But just because someone can’t see our scars (visible or invisible) doesn’t mean they aren’t traumatic for us, our families and our friends.

Why do people feel the need to compare our stories, our struggles, our suffering, our strength, our survival

I’ve learned that the right people will never do that. They will just be there for you. Help you heal. Help you move on. Help you find your strength.

One of the most valuable lessons I learned was that I didn’t need to go through it alone to be a survivor.

I learned to ask for help in healing. I was so afraid of being a burden that it was hard for me. But not only are our friends and family willing to help, but they also want to help. It’s also incredibly valuable to find a community that not only supports you but has an understanding of what you’ve been through. I found my community on Instagram but there are incredible programs and support groups for all kinds of traumatic experiences and illnesses.

The decision to move back home after my initial diagnosis was one of the hardest things I’ve ever done. I was working with the Chicago Cubs, getting valuable experience in the sports industry, and had just started graduate school when I was diagnosed. It was everything I had been working for but my first skin check after diagnosis was the day before my lease was up.

I couldn’t imagine leaving a city that I loved and a job that was supposed to be my first step toward the career I’d been working so hard for. I also didn’t know if I could handle a second diagnosis without my friends and family nearby to help me. I felt like I had to choose between my future and the support of loved ones. It felt like loss and at the time, it felt like failure. 

But leaning on others doesn’t make you any less strong or any less of a survivor.

There was no right or wrong answer. Looking back, I truly believe I made the best decision for myself. And although giving up that path was a loss, it was definitely not a failure.

Nobody will know what is best for you except for you.

Maybe you need to move home due to expenses. Maybe you live with your family to get the support and help you need. Maybe you relocate to be closer to those who can help you. Maybe you work from home to cope with the trauma and limit exposure to potential triggers. None of these things are setbacks or things to be ashamed of or failures. They are acts of self-love and survival.

They’re all part of being a survivor.

And it changes you.

It was about a year after I landed my first full-time job in sports and was applying for my “dream job” when I realized how much more cancer had changed me than I realized. While I still loved working in sports, it didn’t fulfill me the way it used to. I wanted to make a difference, have a purpose.

I decided to do that. I worked with children. I fundraised. I volunteered. I shared my story. I became an advocate for cancer survivors. I became a leader of this site, built to help other women share their stories too.

I had survived some of the toughest years of my life and it made me want to help others.

Read the first part of that sentence again: I had survived.

I still struggle some days but I now recognize my strength.

I still have anxiety before my skin checks but I no longer cry at appointments. I still have moments where I feel like a cancer patient but I no longer feel alone. I still feel lost at times but I know now more than ever who I am and what I’m meant to do. 

As I type these last words, I’m awaiting another upcoming surgery in the new year.

I’ve had two melanomas in the last nine months and now have a severely atypical mole that needs to be removed so it doesn’t develop into cancer. But as of October 8, I’m cancer-free again with a new celebration date marked on the calendar.

Because as Queen Bey and Destiny’s child once sang, “I’m a survivor; I’m gonna make it. I will survive, keep on surviving.” 

I’m a survivor. And so are you.

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