Many cancer patients would disagree, but cancer has been both the best and worst thing that has ever happened to me. Being diagnosed with a rare disease has had a positive and negative impact on my life.

I was diagnosed with a gastrointestinal stromal tumor (GIST) just before my sophomore year in high school. It was tough because if people can’t see the “sick” in you, they don’t believe that you’re sick. In my situation, I had 2 surgeries and was considered “cured” or no evidence of disease (NED). My friends, family, and teachers couldn’t see what I was physically and mentally experiencing. I had fatigue, anxiety, depression, and PTSD. I was also in constant pain from having major surgeries within weeks of each other and was back to school in less than a month. 

I was what my friends would call a “band geek.” I played the french horn for 4 years, but the same year I was diagnosed with cancer, I was forced to quit. My high school required me to join the marching band, too. Just being fresh out of surgery, I couldn’t participate while I was still healing. Even with a doctor’s note, I was threatened by my teacher with a failing grade for the class unless I participated. He said, “I looked healthy, so I needed to participate.” 

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This was a common theme throughout my high school years. I often thought it was because another girl in our school was going through active cancer treatments and had the “hair loss bald look,” and I did not.

I was also in JROTC, and my instructors and friends in the class believed I was faking my surgery and cancer diagnosis. One girl even convinced my class that I was pregnant and had an abortion over the summer. I had a difficult time trying to find ways to fit in and feel like me again. I was forced to go to a weekend camp for JROTC, which involved a lot of physical activity, and at the time, I did not understand what my actual limitations were, and all I wanted was to be a normal kid. 

“Normal” for my classmates was parties, late nights with friends, sports, and other typical things that teenagers did. On the other hand, my normal was making sure I wasn’t going out with friends who had a cold, saying no to weekend get-togethers, sleepovers, and doctor’s appointments. It felt as if I was in and out of the doctor’s office every other week. My normal included blood draws, scans, and everything related to my health and doctors.

At this point, I strongly felt I would have benefitted from going to therapy. However, I did end up going to a support group, twice to be exact, but it turned out to be one of the most toxic experiences in my life.

The first time I went to the support group at my treating hospital was in December of 2015. It was a potluck-style Christmas support group party, and you could bring a friend. During this party, we played games and talked about our cancer experiences. I brought my boyfriend, at the time, with me to this support group party, and I caught him and another cancer patient exchanging phone numbers and hanging out way too close to comfort for me.

The second time I went to the support group was in October of 2017. I decided to give it a second try. We went to one of the host’s brothers’ houses, and he had old arcade games throughout the entirety of this house. An older member of the support group kept telling me I needed to be “more open” and “don’t be afraid to talk to him,” and you can obviously see why this made me uncomfortable. The common theme I noticed in this support group was everyone was always trying to get with someone else. 

After the support group finished, I was invited out with all the boys around my age and older, so I went out with them. Unfortunately, they ended up smoking weed, cigarettes, and drinking in a parking lot after this group. Needless to say, I was peer pressured into smoking, and I did not have a good time. 

I had initially hoped this support group would make me feel like I belonged somewhere and I could relate to some of these people, but it, in fact, did the complete opposite. I couldn’t understand how all these cancer surviving kids were doing drugs, drinking, and partying all the time. And if anything, they encouraged my addictions. 

A better support group or even a therapist would have helped me make the transition to my “new normal” a bit easier. It was hard enough being a sick kid, let alone a sick kid that did not look sick. I think volunteers that host support groups really need to pay attention to what goes on in these groups, especially since we were almost all under the age of 18 at the time. 

Now, 4 years later, I am sober, in therapy, and part of an online community created by @TheCancerPatient on Instagram. Social media played a massive role in why I am more comfortable with who I am today. It is where I found a group of individuals who have entirely accepted me for who I am and have taught me that it is okay to not be okay. Illness doesn’t look the same for each person; you can look completely healthy and feel absolutely awful. You don’t have to look sick to be sick.

I hope for the future, there can be more ways to reach out online for support for GIST patients and other adolescent cancer patients, as well. I also hope that other GIST providers will advocate and push therapy and support groups for their patients as GIST can be a very lonely disease.