Guest Blog: Navigating Relationships as a Childhood Cancer Survivor
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the eleventh in a series of twelve guest blog posts by Rachel. Catch up on her earlier posts here.
Author’s Note: This specific post is primarily based on my own thoughts and experiences and won’t include links or references to social work theory.
As a childhood cancer survivor, I’ve found that forming and maintaining relationships is different for me than my peers. It’s always been difficult for me to form strong bonds with people my own age. Even at childhood cancer family camp, I felt more comfortable sitting in the cabin talking to counselors about serious topics than hanging out with my fellow campers dancing outside and flirting at the boys’ cabin.
I was initially diagnosed when I was in kindergarten, so I was just starting school and learning how to develop relationships with my peers.
I was adamant about staying in school. I didn’t miss too much in the early days, but I did have bullies throughout early elementary school, while I was still going through treatment and wearing baseball caps with wigs in them.
Throughout elementary school, I had only a handful of friends. That was mostly due to my mom’s efforts as our Girl Scout troop leader. We moved from Anaheim to South Orange County as I was entering junior high, long enough after my treatment that this could mean a new start for me.
However, my hearing was getting worse. I started wearing hearing aids around that time. No one seemed to make a big deal out of it. They may not have noticed with my hair over my ears. It is still easy to feel left out in social situations when you have difficulty participating in conversations in crowded situations. Most parties and gatherings involve music in the background, as well as a dozen side conversations. I hadn’t learned to self-advocate yet. What teenager wants to stand out by pointing out their “special needs”?
I attended only a couple high school dances. One was the Sadie Hawkins dance sophomore year. I went only because a friend pressured me into it. I didn’t ask anyone to go with me. The other was senior prom. I went because it’s senior prom. It’s pretty dresses and cute pictures with your date. At least that’s what I had hoped. I asked three guys to go with me, including two underclassmen. In the end, I went without a date. My mom made me a pretty dress. I got some nice pictures of our group, of which I was the thirteenth member, and the only one without a date. It was actually pretty boring. I don’t recall much about it.
Throughout high school, the only close guy friends I had were either gay or Mormon. I never dated. I never thought anyone would like me because of my partial facial paralysis. In fact, to this day I’ve dated only people I met online.
Online dating has certainly become less taboo since I started around 2007, and there are probably more and more people like me around. But I grew up watching romcoms where people met “IRL” and fell for each other as schoolmates, co-workers, neighbors, or colleagues.
In my last year of undergrad, I met my first boyfriend. I met him on OKCupid- or as I liked to call it “OKStupid.” I had joined in 2006 to take frivolous quizzes when I was bored, things like “Which element represents you best?” or “Which ‘Friends’ character are you?”
When online dating, others see only curated photos of you. I posted pictures with my hair looking just so and the camera angle making my facial palsy less noticeable. On rare occasions I might even have a picture taken while wearing makeup, though that felt like false advertising. I rarely wear makeup because I’m scared of getting anything in my overexposed left eye.
In the real world, when casually hanging out with friends, I’ll smile for the camera. Then I’ll see the photos as I’m tagged on someone else’s social media post and think ‘OMG, I look so gross and weird next to <insert pretty friend’s name here>.’ Though I wonder if that’s particular to me with my nerve palsy or if most women have those thoughts.
It took me a long time to think of myself as a woman. This wasn’t because I’m confused about my gender identity, but because my first thoughts were always that things were wrong with me. Before I knew what “ableism” was, it was influencing my thoughts. This was long before “sexism” had a chance to cross my mind. I dealt with the difficulties of being a cancer survivor before thinking about the issue of being female.
My survivorship status is no big deal to my in-person friends. It usually comes up casually, sometimes five minutes into knowing each other, sometimes five years. They’re shocked, but it doesn’t change anything between us.
Then there are the relationships I’ve had all my life, the ones with family. They’ve been through everything with me, highs and lows, thick and thin.
I don’t know what my parents were told about my long-term prognosis when I was a kid. It’s not something we discuss. I don’t know if they imagined me graduating from high school, much less college, then grad school. I think everyone was just surprised when I made it past the five-year survival mark.
There just seemed to be a point in my life when my family expected I could be “normal” or something. But like I’ve mentioned quite a few times, even the professionals don’t know much about long-term survival. So it’s understandable that most family members don’t understand. They may think I’m overreacting when I get emotional when upsetting things happen or major plans don’t go my way.
As I said in my last post I went through so much trauma at such a young age that things tend to pile up. It’s like I haven’t had the chance to process and grieve one trauma when another occurs. Everyone is so busy with their lives that they can’t deal with my bouts of depression. I’m an adult now and should be figuring everything out on my own, right? I often feel like after years of negativity I’m just bringing everyone down with me.
In my adult romantic relationships as well, I tend to think I’m just going to bring anyone I’m with down with me. It’s why my relationships fail. I spend so much time worrying that it will fail that it becomes a self-fulfilling prophecy. (That’s one of the terms used by therapists to describe faulty thinking).
Based purely on my own observation and no scientific evidence, I notice that if survivors don’t have visible nerve damage or disabilities, they tend to live their lives as if nothing happened. They only tell people they become extremely close to about their childhood diagnosis.
Disclosure is a personal choice. It depends on one’s comfort level and on the stage of the relationship. For example, on my dating profiles I mention that I have a hearing loss, but I don’t include my life story. (I suppose that’s now available if anyone wants to Google me!)
With that, I hope you’ll read my upcoming post wrapping up this blog series. Subscribe to the Children’s Cancer Cause blog to receive an email alert when my final post is live!