When I was in college, I participated for one semester in a group called ATLAS: Adolescents Transitioning to Leadership and Success. My best friend and college roommate, who has juvenile diabetes, was the one who brought me to a meeting and got me involved. ATLAS was a support group run by college students with chronic illness (anything from diabetes, to Crohn’s disease, to cancer), for younger teenagers with chronic illness.
Participating in ATLAS was an incredibly positive experience. Every other week, we would meet as mentors to plan the upcoming meeting. Guided by a social worker from the Duke University Children’s Hospital Transitions Program, we would discuss important issues that we faced as we began taking charge of our own healthcare in college: insurance, finding a specialist for your illness in a new area, balancing academics and the time it takes to manage your illness, and so much more. We would then outline a plan for the meeting: the fun ice breaker we would begin with, the introduction to the topic of the meeting, the main activity of the meeting, and then the closing group discussion. I thought I had joined ATLAS to help guide the younger teens and teach them the skills they would need to start taking leadership roles in the management of their health. But, now that I think back, I think I got much more out of it than I gave.
Before joining ATLAS, I did not think of cancer as a chronic illness, and I definitely did not know anything about “Transitioning.” You may not realize it, but the care involved in managing your health during and after cancer treatment, unfortunately, makes it a lifelong chronic illness. And, when you transition from a teenager to an adult, the responsibility for managing your wellbeing suddenly falls in your lap.
I did not recognize the importance of a group like ATLAS until I graduated college in May, and moved across the country to start my first job. Suddenly, I had to keep track of everything myself. I was no longer having my mom scheduling all my appointments for the times I was home over Thanksgiving or Winter Break. I slowly realized I had no idea what my insurance plan could cover in this new area I was living in, I had no idea how I should find new doctors and care providers in my new area, I had no idea how often I should be scheduling my various appointments, and I had no idea how to fit all of this into my busy work schedule. When you can’t make phone calls to a doctor’s office since you work 9 to 5, how do you schedule your appointments? Seemingly simple questions like that piled up and were a bit overwhelming. I thought back to my time in ATLAS and thought about what that “Transitioning to Leadership and Success” part would mean for me. How can I best take leadership in managing my health?
So, like I usually do when I’m stressed out or trying to plan a big event, I made a list. I made a list of all the doctors I have visited in the past year and the reasons I visited them. I then pulled out my parents’ insurance card (I’m still covered under their plan) and did some research on what that plan meant, and the clinics and hospitals in the area that accepted that plan. I set up an individual CVS account so I could track all my prescriptions and when they needed to be refilled (hint: you can set your account to send you reminders!). I then got on the phone and scheduled all the appointments I would need for the next 6 months: dentist, gynecologist, primary care provider, and oncology follow-up. Just as suddenly as I had gotten overwhelmed, I was suddenly relaxed and feeling in-control of my care.
But, things aren’t always that easy and simple strategies like making a list may not always work…for so many reasons: where you live, whether you have access to insurance, whether you have transportation that can get you to pharmacies and doctor’s appointments, whether you make enough money to afford any of that, and much more. This is increasingly noticeable to me as I am planning another major transition: moving across the world to Sydney, Australia with my boyfriend, who was offered a fantastic new job there. So, I’m spending my time googling advice on the matter and searching for resources.
These recent experiences have led me to wonder why more is not done to help teens with cancer learn how to take a leadership role in their own health and how to manage the transition to adult care? If we want survivors to have better quality of life, wouldn’t it make sense to equip them with the tools they need before they actually need them?
I applaud Duke for even having a Transitions Program, and for actively branching that program out into the community through ATLAS. However, a program like that seems to be the exception rather than the norm. I think it would be awesome to see survivorship clinics implement similar transition programs, so patients and survivors can be empowered with the knowledge and skills they need to take care of themselves, no matter where their lives take them.
For resources about transitioning to adult care and taking a leadership role in managing your health, you can learn more about the Duke Transition Clinic and the ATLAS program at: http://www.dukechildrens.org/services/transition_of_care and http://www.dukechildrens.org/services/atlas. Got Transition is also a great website that has frequently asked questions and information about transitioning your healthcare as you get older: http://www.gottransition.org/youthfamilies/index.cfm. The Society for Adolescent Health and Medicine has resources as well: https://www.adolescenthealth.org/Resources/Clinical-Care-Resources/Transition-to-Adult-Care.aspx.
Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, shortly before her 13th birthday, when her cancer relapsed. She then went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-two years old and a graduate of Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. She currently works full-time as a research assistant in a pediatric health psychology lab at the University of Miami, but it is her goal to become a pediatric clinical psychologist and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. As CKN Section Editor, Clarissa hopes to provide advice based on her personal experience and to share relevant news and research to help young adult patients and survivors find new ways to live their best life in spite of the shadow of cancer. You can find Clarissa’s book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, on Amazon.com. To learn more about Clarissa and her book, or to find AYA cancer support resources, visit her website and blog at www.teen-cancer.com.