When I tell people I’m looking forward to working with a group of teenagers, they usually groan and give me odd looks. But teenagers are my favorite age group to work with. I love how much energy they have and how willing they are to think outside the box. And I find that teenagers who’ve experienced chronic illness are insightful well beyond their years because they’ve been through a lot.
Teens are at an odd age, often learning to cope with many raw emotions. On one hand, they are no longer children. On the other, we can’t expect them to behave like mini-adults because it’s just not within their capability—no matter how mature they are for their age. I hope to continue working with the chronically ill teenage population because I feel like they are continuously being let down. I know, because I definitely felt that way.
I was 16 the first time I felt something was amiss. I had to go to a specialty facility because I kept getting infections. It was a pediatric facility, and I was the oldest patient there. Others there often pointed out how much older I was than other patients—and not in a nice way. For example, I have some pretty significant asthma issues. I was told more than once that there were little kids at the same facility taking breathing treatments around the clock. (Not that we were competing, but my respiratory tests turned out worse than all of the kids there.) I also had a pH probe study where a tube was placed down my nose into my stomach. It was supposed to last for 24 hours, but within six hours I had problems swallowing. My throat felt tight. Again, I was told there were little kids there who did not complain. I apologized. I felt embarrassed.
My mom brokered a deal with the nurses, and they agreed to stop the test earlier if I ate breakfast. But it was hard for me to swallow, so I was too scared to eat. Still, I painfully ate breakfast while coughing and feeling like I was choking. After breakfast, they told me it didn’t matter that I’d eaten; I had to keep the probe in place for a few more hours. My mom was appalled. Another test to check out my airways showed that my throat had an unusual reaction to the probe—almost allergic in nature. My throat had swollen around it and created raw burn marks on each side. The doctor was furious that the on-call resident hadn’t listened to me. Suddenly, everyone was nice to me. They knew then that the throat symptoms I experienced were real. To this day, I believe if I’d been a young child at the time, my complaints would have gotten sympathy, and if I’d been an adult, I think someone would’ve actually listened. Unfortunately, I was caught in the in-between stage of life.
If this had been a one-time occurrence, I wouldn’t think it was a widespread concern. But that wasn’t the case for me. I have persistent anemia issues due to iron deficiency. Because of this, I will need intermittent transfusions for the foreseeable future. I tried so desperately to avoid transfusions that I really went overboard trying to eat all things iron, in addition to religiously taking my iron pills. I ate beef every day. I ate so many clams and black beans. Dark green leafy vegetables were a staple, but with my absorption issues, it didn’t help much. I was hospitalized at one point for an unrelated issue, and a physician who was not my usual doctor blamed my anemia on being a “stupid teenager.” He was wrong, but I once again apologized for something that was not my fault and beyond my control. I knew this, but it didn’t stop me from crying for an hour.
Then came the worst moment for me—transitioning into the non-pediatric world. It happened very suddenly. Some patients with chronic health issues stay with pediatric physicians well into their adult years due to specific health needs. That wasn’t the case for me, though. Instead, I had a mass exodus of many specialists. One day they were my doctors, and the next they weren’t. Because the pediatric doctors were located at a separate facility, I had to find all of my own new adult specialists. It was complicated and stressful.
I have several close friends who are doctors. They acknowledge that it’s not easy for chronically ill teens to find new medical providers. When that transition time came for me, it meant I temporarily didn’t have the same nurse resources I had before. So if I wanted to know something as simple as whether eyebrow waxing was OK while taking blood thinners, I could no longer call my pediatric nurses. My health issues didn’t take a break during the time I had to transition to adult care, either. As usual, I kept developing blood clots.
I’ve found that teenagers who have health issues are expected to be mature beyond their years. They are expected to be less emotional than their years allow because they are not “children.” And that’s not fair to teenagers still trying to find their way in life. I see hope in programs like the National Hemophilia Foundation’s Art Workshops for 100 Girls With Bleeding Disorders. Programs such as this one equip young people facing health issues with tools of expression to help them feel included and acknowledged.