What I Learned Interning for Stupid Cancer
The cancer community is one people usually enter into strictly out of necessity. I’ve been lucky enough to have good health, and have therefore gone uneducated about the difficulties surrounding young adult cancer. I’ve spent my time interning at Stupid Cancer focusing on a blog where cancer patients, survivors, and caregivers are all able to tell their story and give insight into life with cancer. This helped educate me on issues I didn’t even know were issues, as well as educate me on the daily struggle young adults with cancer face.
I spent my first week at Stupid Cancer doing research. I read through other blogs and websites to get a feel for the information I was going to be handling on our blog. This meant that I spent my first week trying to hide the fact that I was crying at my desk. It’s hard not to get emotional when you read so many both unfortunate and incredible stories. I learned a lot about what people with cancer go through in such a short period of time. Here are some of the biggest points I take away from this experience:
1. The young adult cancer community faces obstacles other age groups don’t.
Before I interned for Stupid Cancer, I thought all cancer patients faced the same obstacles. Through my work here, I’ve learned that young adults have their own set of problems in addition to the cancer itself and the side effects of treatment. The one that jumped out at me the most: infertility risk. While it’s such a real issue that young adults with cancer will deal with throughout their treatment, it’s something I never would have even thought about prior to my involvement here. The treatments for cancer could cause an inability to have children once the cancer is gone and you try to move on with your life. The infertility risk presents a multi-step issue.
The first step: Were you made aware of the risk? Some doctors don’t consider the patient’s right to fertility preservation and don’t think to inform their patient of reproductive health options.
The next step: If you were made aware of the risk, were you given any fertility preservation options? The information that you may become infertile is just that — information, unless it’s accompanied by a game plan. Harvesting eggs or banking sperm is an option if there’s time, but sometimes the cancer is so aggressive that delaying treatment doesn’t seem feasible.
The next (and final?) step: Whether or not you were made aware of the risk, and whether or not you were able to take steps to preserve fertility, were alternative family planning options made available to you after treatment? For instance, in a case where delaying treatment wouldn’t have been possible, was adoption discussed? Surrogacy? Any alternative family planning methods? As Stupid Cancer’s Matthew Zachary said in our most recent podcast: “You have the right to be pooped on by your own child someday.”
2. Health insurance can be tricky.
As a teenager in high school, you’re covered under your parents’ health insurance until you graduate. If you go to college, you’re still covered until a certain age. If you get diagnosed with cancer in high school and can’t continue on to college, will you be dropped from your insurance? Or, if you’re diagnosed in your 20’s or 30’s and are already working, will you lose your insurance if you have to stop working in order to undergo treatment? These are important questions that nobody thinks to ask until they have to. Health insurance, particularly for young adults, is confusing enough for a healthy person. Add in the cancer diagnosis, and it gets even more complicated. Speaking to your health insurance provider for some awareness is probably a good idea at all ages, but specifically for this age group where coverage is so conditional.
3. Things are not always what they seem.
One of the most common threads throughout the stories I read was the frequency of misdiagnosis. There were multiple doctors that told patients they just had the flu, and that it would go away on its own. In reality, these patients had cancer. They knew their body wasn’t right, and continued to press until doctors found the cancer. These stories all came with the same call to action: “Be your own advocate.” It’s easy to be brushed off by a doctor. Their answers may seem to fit, and you may take their word as fact and assume you’ll just get better. These stories acted as a reminder, though, that medical professionals aren’t always right the first time. Asking the right questions and pressing when you don’t feel something is right could be what saves your life.
4. Community and peer support is one of the most important resources for someone dealing with cancer.
Yes, medicine is clearly very important in fighting cancer. But the person fighting the cancer needs as much positivity and support from those around them that they can possibly get. The support will keep their spirits up and help them push on through treatment and survivorship. This community involvement helps keep cancer patients and survivors from succumbing to depression and loneliness. Stupid Cancer plays a great role in providing community through social networking, Instapeer, local meet-ups, and other events like OMG, CancerCon, and the Stupid Cancer Road Trip. Creating this young adult cancer community helps show every person within the community that they’re not alone. There are other people in “the fight” with them, who can understand what they’re dealing with and provide support, or whom they can provide support to in return. Young adults with cancer have had a history of feeling isolated; they’re not pediatric, but not yet geriatric. There was a large middle ground that had previously gone overlooked.
Of course, these are only some of the main points of what I’ve learned during this brief glimpse into the life of a cancer charity. Prior to my time here, I never even considered working for a nonprofit. I took an elective course in grant writing and never understood why such a skill was even being taught in college. We were all in college to eventually make money, right? However, the things I’ve learned while interning at Stupid Cancer made me feel silly for thinking those things. Until you’re exposed to the life of a nonprofit, it’s hard to imagine being part of one. My work at Stupid Cancer, however, made me realize how great it can be to work for a nonprofit. Their mission to provide advocacy, support, and awareness for young adult cancer showed me how much good an organization like this can really do.
