As a young adult cancer patient, it is okay to feel ugly, unproductive, and dumb. Cancer might kill you, but so-called “negative” emotions and unpleasant feelings won’t.
When I was diagnosed with cancer at age 27, I went from being a social butterfly with an active dating life, to a homebody dressed in pajamas around the clock. I didn’t feel pretty. I also didn’t feel productive. My career ambitions as a choreographer went on hold. I crafted dances in my head while I was laying still in MRI machines, but I didn’t have the energy to make it into the studio, and my visions did not make it onto a stage. I had to reserve my energy for other things like researching my disease and scrutinizing my doctors. I was becoming a savvy patient educated about biology, pharmacology, and radiology. Yet, I was so sleep deprived from stress, I sometimes couldn’t hold an intelligible conversation with my friends. Huge fluctuations in my thyroid hormones caused cancer brain fog, and I didn’t have the mental stamina to read the newspaper or a fiction book. I was not my snappy intellectual self. Instead, I felt dumb.
As a young adult cancer patient, I was separated from my peers both psychologically and physically. My mind was focused on big existential questions: ‘Would I live?’, or ‘How does one endure suffering?’ While my friends were at work, I was cooped up in my apartment thinking about these large questions. It could have felt dangerous to let my mind wander to these subjects, but it didn’t. Instead, it was a relief because these issues were real. And feeling unattractive, unproductive, and intellectually stunted were real too. It was hard and sad to face these questions and to feel this way about myself. But it was also useful. It took a lot less energy to see things as they were than to will them into being different. In fact, it was often cathartic to look in the mirror and cry hard about how stuck I felt and how scary this disease is.
When you are in your twenties or thirties living with cancer, there is no shortage of people telling you to feel beautiful and sexy or to use this opportunity to transform your life into being more creative, grateful, or loving. From friends and family, to pop icons and organizations, lots of people send a message that it is best for young cancer patients to focus solely on our vitality. There is a dearth of people saying it is okay to feel like a creepy bloated ghost of your former self, or like a confused lost dog shivering in the rain. I had to tell myself it was fine to feel this way, because everything changes. Everything changes. If I went from being a healthy vegan choreographer to a sick cancer patient, I could certainly go from feeling sad to happy, or unproductive to useful, or ugly to attractive. Believing that everything changes is how I learned to experience what was really happening to my body and to my mind.
I don’t always want to stare cancer in the face. I need distractions, indulgences, and pauses from reality just like anyone else. But what I cannot do is ignore how I am feeling. Putting on a strong front in the face of cancer rarely works for me. At first, dealing with my anxieties and fears felt like a free fall. Over the years, I have developed some tactics that allow me to face reality in a way that feels sensible and safe. In time, you will learn what works best for you. Until then, here are some tricks that helped me along the way:
1. Know who to talk to and when.
It was important to identify which of my friends could support me at different times. When I was having a really hard day and wanted to talk about it, I would call the friends I knew would listen to my fears and challenges. I had other friends who could not go there and needed to instantly transform my hardships into positive experiences. Those were the go-to friends when I wanted to avoid thinking about the tough stuff and focus on the world beyond my immediate circumstances. Before I picked up the phone or sent an email, I asked myself who was the best person to contact at that moment.
2. Go outside your circle of friends.
Talking to people who did not know me prior to having cancer was a source of comfort. There was no pressure to be my old self. Young adult cancer support groups can be great for this. Unless you are living in a large city or near a big cancer center, it can be challenging to find in-person cancer support groups for adolescents and young adults. But, plenty of them exist online and over the phone. Support groups certainly are not for everyone. If you find it helpful, try talking to a therapist or someone at a helpline. Helplines are for people in crisis, and that includes being a cancer patient who is facing fear, anger, and sadness.
3. Develop a feel-better-fast plan.
Part of the terror of allowing myself to think scary thoughts was the fear of what if I couldn’t come back? What if I got stuck there in a hollow of darkness? Although it never happened to me – not even close – it made me feel better having an escape plan. Whether it is copies of Vogue, your favorite playlist, or a season of trashy TV, know what makes you feel better fast and have it on hand.
4. Find a get-real role model.
There are plenty of stories about people with cancer who have climbed mountains, but fewer stories about cancer patients who ventured out of bed at 4 AM, cried on the kitchen floor, and felt better afterwards. I have never wanted to climb a mountain, but I have wanted support and encouragement to sit alone and face my anxiety. Have in your mind an emotional role model, someone who handled a stressful situation in the way you would like to. They don’t have to be a cancer patient. The world is full of people facing different kinds of adversity in vulnerable, honest, and smart ways. Think of one and keep them in your mind.
5. Be kind to yourself.
Cancer is not just a biological disease. It is a life circumstance that brings chaos and uncertainty. Receiving a cancer diagnosis is even more shocking and disorienting as a young person. There is no one right way to go through cancer. It is a process of trial and error. Be kind to yourself as you learn how to figure out what your emotional needs are and how to meet them.
Kairol Rosenthal is the author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. As a patient expert on young adult cancer, she is regularly interviewed in international media, and has written many chapters on the subject. Her blog Everythingchangesbook.com contains over 300 posts for patients and caregivers about living young with cancer.