THE BLOG
05/29/2013 01:06 pm ET Updated Jul 29, 2013

Young Adult Caregivers: Where Do We Fit In?

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As I sat in the oncologist's office with my boyfriend of one year and his parents, listening to the doctor talk about how constipated Chris would be after his first round of chemotherapy, I knew our relationship had reached a new level. Ready or not, it was time to get comfortable talking about poop; and hair loss, chemo brain, infertility, mouth sores, survival rates, and a host of other unpleasant side effects. Chris had been diagnosed with Hodgkin's Lymphoma, and our lives would never be the same.

That was five years ago. I was in my senior year of college in Pennsylvania while Chris was living back at home in New Jersey and working at his first post-college job. I was 22, he was 23. We spent our weekends having a few too many beers with friends and snuggling up to watch obscure movies for my film classes. Even though Chris had started his first "real" job, we were both very much living the carefree college life. When he noticed a lump on his neck, I couldn't wrap my mind around the fact that it could possibly be cancer -- he was too young for that. I had no idea that 72,000 young adults (aged 15-39) are diagnosed with cancer every year. Up until that point everyone in my life who had dealt with cancer was a child or an adult; it truly never occurred to me that a healthy, young adult could get cancer; let alone my boyfriend.

Young adults with cancer are the most underserved patient population by age, and this is really tragic because on top of fighting cancer, this group has to deal with a lot of unique issues that differ from other age groups. Will I be infertile after my treatment? Do I need to move back in with my parents? Will I still be able to graduate? How will I pay for my medical bills? Who will want to hire me now? Who will want to date me now? My friends don't understand what I'm going through -- how can I maintain my friendships when my life is so different now?

As the girlfriend of a young adult with cancer, I also faced a unique struggle that caregivers of children or adults don't face: trying to find my place and purpose in all of this. Since Chris' parents were his caregivers, what was my job?

There's never a good time to get cancer, but relationship-wise it couldn't have come at a more awkward time: we were dating long enough to be in a serious relationship, but we lived in different states and it was still a fairly new relationship. I was still in school so I missed many of his doctor's appointments and chemotherapy sessions. When I did get to see Chris, the last thing he wanted to do was talk about how he was feeling for the millionth time, so I always felt out of the loop on his progress. I understood why he didn't want to talk, and preferred to spend our time together catching up on our favorite shows and acting like everything was the same as it was before cancer took over; but not talking about it made me feel helpless. I couldn't always be there for him physically, and I didn't always know what was going on with him. I felt like I wasn't doing enough for him.

I became more absorbed than ever in my school work that final semester because it was the only thing that kept my mind off of things. I was really lucky to have supportive friends and professors at school, and I tried to stay involved with my normal college life but I felt like I was just going through the motions. I was at the party, but my mind was not. I laughed with my friends, but inside it was tearing me apart that I was "having fun" when I wanted to be taking care of Chris.

When I was at school I felt so guilty for not being with him -- a guilt I still felt after his treatment. I remember crying late one night because I wouldn't be able to bring Chris to the Senior Ball; and then I cried even more because I couldn't believe I was getting upset over such a stupid thing while Chris was dealing with the unimaginable. On the flip side, Chris felt guilty when I wasn't at school. He hated the fact that his illness was affecting those around him.

Chris has been cancer free for five years now, and up until very recently I have struggled with the fact that I felt so uninvolved during his treatment. It wasn't until we attended Stupid Cancer's OMG 2013 Cancer Summit for Young Adults, (and talked about things we had not talked about in years), that I realized what Chris had been telling me all along was actually the truth: that he couldn't have gotten through this without me, and I helped him in more ways than I knew. It finally became clear to me: I was so focused on my desire to be his caregiver I didn't realize that by not being his caregiver -- not knowing exactly which medications he was taking, not asking how he was feeling at every moment, not being there every second to give him a pitying look -- I had actually given him what he and every other cancer patient want most: a sense of normalcy.

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