This is the sixth and final (here are parts one, two, three, four, and five) in a series about my teenage years, which were spent almost entirely in a state of defiant self-destruction and non-compliance. It is the hardest part to talk about, so thank you for bearing with me.
I evaluated a weight loss program years ago that consisted of three stages: all food controlled (bought from the company), some food controlled (some bought from the company, some bought by patient), and no external food control (all food bought by the patient). The biggest critique I had after several months was the difference in levels of support between the fully controlled stage and the half-controlled stage. When all the decisions are made for you, it can be easy to start building healthy habits. But when the patient transitioned from stage one to stage two, it felt wobbly. There was less support offered. I told them that it should be the opposite. Once the person had to start making some decisions on their own, support should have increased until the person was comfortable with the challenges and possible bad choices that were now in their hands.
It’s the same with patients. Transitioning between being a child patient and an adult patient is foundational to how long-term patients handle their conditions for the rest of their lives. As one of the least considered, least understood, and least resourced stages of chronic patients’ lives, it’s also one of the most precarious.
I know from experience, of course. The first stage of my medical transition was quick and dramatic, stemming from the sudden onset of diabetes complications. But the second stage was something else. That didn’t happen until I was 24, not exactly the age we think of when we envision children becoming adults.
It was my mother’s death that finally kicked me into condition adulthood. Before she died, I was wholly emotionally dependent on her. Nearly every decision was vetted with her, and I was perfectly fine leaving it that way. It was easy. Of course, that was no longer possible after she died.
Once I had gotten my diabetes under control for the first stage, I still had three years in college, which for me was what I think of as a ‘soft’ environment. I went to a small liberal arts college, where I called my professors by their first names and was on familiar terms with half the administration. It was the kind of place that kept a barrier between students and real life – we were there to study. Perhaps we were exposed to adulthood during internships or study abroad programs, but internships are temporary, and the college was still a protective umbrella when you were on an abroad program. Of course, there were summer jobs, but most of us lived at home while we worked.
After college, my mom got sick. And by sick, I mean terminally ill. I went from graduation to primary caregiver within days. There was not an opportunity to become independent then. I lived with my mom in my grandparents’ condo while she was getting treatment and I didn’t even pretend to look for a job, except for once, when I worked one project for a temp agency. I took the time to care for her up until the end because I could. I’m not sure what I would have done if I had already joined the adult world.
She died nine days after I turned 24. I ran away to Texas for a while, but when I came back, I could no longer delay adulthood in life (the way most people become adults) or in my condition. The emotional weight of the year sat heavily, but by that time, I was ready to leave previously poor or placeholder care behind. I had an endocrinologist and a psychologist I trusted. And, for better or worse (mostly worse), I had been making medical decisions for myself for a long, long time, as well as learning both my body and the system.
I didn’t particularly want to move forward by myself, but the alternative would have been going backward into that world of noncompliance, which, hadn’t gotten me to a place I wanted to be. So, forward it was.
It’s not usually that clear a line, especially for people who are diagnosed as young children. They need a graduated approach where parents slowly hand over control, with plenty of room for mistakes and discussion and celebration of successes.
I do wish there was more focus on this within healthcare communities, with the understanding that kids don’t just suddenly become adults ready to be in charge of their own care at 18. Or 21. And that these transitions can be fragile. Mine was especially so being so close to my mom’s death. It’s quite easy to slip between condition childhood and adulthood for a while before you make the full transition.
If we could develop support systems for patients transitioning between childhood and adulthood, we might not have to chase them with remedial programs after the damage has been done. It’s always better to get the foundation right. Right at the transition.