Being diagnosed with gastrointestinal stromal tumor (GIST) cancer can be challenging for many reasons. One of those being it is an “invisible” illness. When people hear “cancer,” they think of a bald, skinny, sick, helpless person, which in many cases is far from what it actually looks like. Many of my cancer friends actually gained weight, as I did, throughout treatments, and like me, many actually got to keep their hair.
GIST is not only an invisible illness but a rare disease. In my experience dealing with GIST, sometimes you can end up falling through the cracks. Before I was an outpatient, I was under the impression that when you’re sick, you go to the doctor, get the medication you need, and that’s it. I have learned over the years that you need to advocate for yourself, especially as a young adult.
Pain Does Not Have to Result in Addiction
After my first 2 surgeries, I quickly became addicted to prescribed narcotics. I wish my primary healthcare provider at the time (my pediatrician), and the rest of my medical team would have monitored the situation more closely. At first, I was in a lot of pain, so the relief was much needed. After a while, it should have become a red flag when I was constantly asking for more and more. All I had to do was go in and say my incision site still hurt, and in the blink of an eye, my prescription was refilled.
This went on for about 2 years before I finally decided to quit those on my own and went on to use a “lesser” pill to numb my addiction. In high school, I eventually decided to quit cold turkey after overdosing. Needless to say, it was an awful experience, and it could have been, in my view, prevented by a more attentive medical team.
When you’re an adolescent or young adult, doctors tend to talk mainly to your parents and not to you. Communication does need to be improved between doctors, patients, and parents. But adolescents are more aware of what’s going on than you think, and their voices should be heard.
Being a long-term GIST patient of 8 years now, I look back and wish my mother and healthcare providers had encouraged me to have therapy and palliative care. Diagnosis is not something they should have developed without my input. As an adolescent, I would have benefited from therapy as I didn’t know how to cope with my diagnosis. I couldn’t understand how I had cancer but didn’t need to go through typical chemotherapy and radiation therapy treatments. Instead, I had surgery and was considered “cured” for the 5 years after.
Misunderstood, Bullied in High School
I got bullied throughout high school because my classmates were under the impression that I was lying about my diagnosis. We had another student who was going through active chemotherapy, radiation, hair loss, etc. It was traumatizing being invalidated for an illness you can’t see. I spent those high school years trying to prove to my fellow classmates that I did, in fact, have cancer but was considered cured because they took the entire tumor out at the time. In this situation I would have benefitted from therapy and having some guidance.
Therapy can help clarify the ins and outs of how the patient is feeling and find healthy ways to cope with the anxieties and other mental health issues resulting from the diagnosis. I also believe it could have helped me find my voice early on to advocate for myself. Palliative care is also something that could have also helped me with advocating for myself and improving my quality of life.
Just over 8 years after my initial diagnosis, I am now 3 months into therapy, and I am honestly thriving. I am not mad at the fact that my mental health and physical health weren’t taken seriously as I am still alive today. But I do hope other healthcare providers can learn from the mistakes my health care providers made so their patients can have a better experience and a better quality of life.