“I Didn’t Feel At Home In My Skin” - A Teenager’s Vasculitis Journey
“When I was diagnosed with vasculitis in 2005, it felt like there was no one else in my shoes.” Meagan Cramer was 15 when she first started getting symptoms. Her pediatrician kept dismissing her; “He figured I just had the worst allergies and sinus infections he had ever seen.”
But her mom had that mother’s intuition. She kept pushing. “My mom kept fighting,” Meagan said. “My pediatrician thought she was crazy.” When the pediatrician finally sent Meagan to the ENT, he, too, didn’t believe her. “When he met me,” Meagan said, “he called the pediatrician to see what kind of family we were. He asked my mom to leave the room and, with her outside, he repeatedly asked me if I did drugs: ‘Do you put illegal drugs in your nose?’ I kept saying no.”
Eventually, doctors conceded, giving her “every test under the sun.” By the time her bloodwork came back, they had a strong suspicion it was granulomatosis with polyangiitis (GPA), a form of vasculitis. She was sent to Children’s Hospital in Boston, where she was pumped full of steroids for 10 days.
When her diagnosis was confirmed, even her doctors weren’t sure what to do. She was the first child with vasculitis they had seen. As Meagan said, “I felt so alone.”
For Meagan, the hardest part was that vasculitis is an invisible illness. “Not only can’t you see it,” she said, “but people had no idea what it was.” She struggled to explain what was happening to her friends. “I went from being someone who was skinny and what I felt was pretty to not even three months later being someone unrecognizable. I gained close to 40 lbs in three months.” Meagan felt like she was losing her friends. She was missing school every Wednesday for IVIG and prednisone treatments, treatments that kept her up all night. She remembers taking walks with her dad in the middle of the night or doing homework at 2am.
“It was foreign territory for my parents, too,” she said. “I wasn’t going out. I couldn’t do things normal teenagers were doing. I didn’t have the energy. My parents became my best friends. They were and still are my rocks.”
When it came time for her semi-formal at school, she didn’t want to go. Her mom encouraged her, “You’ll have so much fun,” she said. Before the dance, all her friends took pictures and Meagan, not feeling at home in her own skin, didn’t want to be in the photos. It wasn’t until years later that her mom told her this: After Meagan left for the dance, her mom sat in her car and cried. It broke her heart to see her daughter so unhappy in who she was.
“I didn’t have anyone to talk about it with,” Meagan said. She had never met another teenager with vasculitis. “I remember that first summer trying to put on a bathing suit. My stretch marks were so bad, purple marks everywhere. I didn’t know who to turn to.”
Meagan’s vasculitis impacted her entire family. Now a mom herself, Meagan looks back at her parents with a new perspective: “I just think of my parents, how their whole lives changed. Financially, it was so much to pay for all the treatments. And it was a full-time job for my mom to deal with the insurance company…They saw me at my worst and were there for me through the worst.”
Meagan admits that her disease was hard on her younger brother, too. “I still remember a time,” she said, “when I was leaving in an ambulance. My mom was with me. And my poor brother was standing in the street just watching us leave. He didn’t know what was happening.”
Today, Meagan’s own children—her 4 year old son Matthew and 2 year old son Grady—are her “gifts from God.” When she and her husband were engaged, they went to a fertility specialist. She was about to start Cytoxan and the doctors didn’t let her harvest her eggs first. “The doctor assumed that I’d need an egg donor when I was ready to have kids some day. The doctor went so far as to say, ‘We’ll find you a pretty brunette from Northeastern University and that’s whose eggs you’ll use.’” At that point, Meagan said, she thought was never going to have kids. She was devastated.
But the doctor couldn’t have been more wrong. When it was time, pregnancy came easily to her.
As a parent, Meagan’s greatest wish is to be there for her kids. “I just hope that all the drugs I’ve taken over the years don’t affect me later in life,” she said, “so I can still be strong for my kids.” Her children are young, but her oldest is starting to understand that his mom is sick. “When I do my weekly infusions,” she said, “he’s started saying to me, ‘I’m so sorry for you, Mama.’” This fuels Meagan to instill resilience in her children.
“I hope to show my kids how strong I can be, even though I have this disease where I take 14 pills a day. It doesn’t stop me in anything. I hope my kids can see this: even going through all this in life, they can still accomplish whatever they want.”
She hopes they know that, even in the face of the unbidden, they can keep dreaming and building full, nourishing lives. Joy, she believes, is our birthright, too.
Written by Ashley Asti
