Spotlight Story Program: Erin’s Story

Meet Erin Raftery

Since before Erin Raftery could even talk, she was dealing with problems in her health. From a battle with leukemia to cardiac conditions, Erin has had to adapt her lifestyle to her health, and that made Erin a stronger and more accomplished young adult than her wildest dreams.

Yes, I spent a lot of my teenage years in outpatient care at pediatric hospitals.

When I was eighteen months old, I was diagnosed with leukemia and received chemotherapy until I was three years old. The chemotherapy caused me to have several after effects. The first was diagnosed while I was still receiving chemo, and that would be Cardiomyopathy.When I was ten years old, I was diagnosed with epilepsy. When I was a sophomore in high school, my heart condition worsened and turned into a condition called Dilated Restrictive Cardiomyopathy.  Also in high school, I was diagnosed with asthma. And lastly, when I was sixteen years old, I was diagnosed with primary ovarian failure.

The best way I can describe receiving pediatric medical care as a teenager, would be how I would describe myself as a teenager: awkward. When you’re a teenager, you’re half child-half adult, and that consists of wearing braces while applying for college. It’s just awkward.

And so is receiving pediatric care as a teenager because in each room, there are pictures from Sesame Street, and toys to play with if a child starts crying. It makes you feel like a child.

But I’ll never forget the day when a nurse came into my room during a routine visit and told me that I should have a living will. And I was not adult enough to handle that. When you’re a teenager, you’re treading between two identities and pediatric hospitals are only catering to one.

And not to mention, you’re treading these two identities during some of the scariest moments of your life. I think care for teenagers could be improved by trying to cater to them instead of children. I’m not saying that rooms for teen patients should have Avril Lavigne or Simple Plan blasting on loop, nor that all teenagers with chronic illnesses are super angsty, but maybe pediatric hospitals should have certain sections of the hospital for teens.

Or pediatric hospitals could plan events where teen patients in the hospital can interact. It doesn’t have to be an uncomfortable 8th grade dance, but interacting with people who share the same experiences as you is incredibly helpful.

Although there can be improvements, it is the doctors and nurses I’ve had since I was eighteen months old to the present that have given me the opportunity to live a great life. And my medical experiences have undeniably shaped who I am. I have a desire to accomplish all of my dreams as quickly as possible because I know tomorrow I could wake up and my whole life could be flipped on its head.

My medical conditions are stable today, but there’s no guarantee for that to be the case tomorrow. But as of right now, I am pursuing my dream of journalism, and currently am an Associate Editor at Inside Health Policy, reporting on federal health policy in Washington, D.C.