“Will I Ever Feel Normal Again?” How Jenna Lea Faced High School and Vasculitis

“It’s not often in life, especially so early in your life, that you have odd experiences,” Jenna Lea, a rising senior at North Carolina State University, said. “I would call this”–getting diagnosed and living with vasculitis–“an odd experience.” Now, she wants to make the most of it, for herself and the vasculitis community. “I have the opportunity and ability to share my story,” she said. “I want to help others know they’ll be okay, because I’m okay. I can be their cheerleader.”

In February 2020, when Jenna was 16, she couldn’t ignore the sense that something was wrong. “I didn’t feel like myself. I kept thinking, ‘This is not me.’ I am not the person who sleeps all day long, who’s not interested in going to school.” At the time, she had a persistent headache and a rash on her neck. The rash tested positive for ringworm five times, but when she went on antifungal medications, it didn’t clear up.

For four years prior, Jenna struggled with an undiagnosed eating disorder. By the summer of 2019, she had finally regained a healthy relationship with food and felt her body was at its healthiest weight in a long time. But as autumn rolled around, she started losing weight, about a pound a week, this time without trying. “I had been eating more than I had ever eaten,” she said. Her unexplained weight loss was followed by frequent, low-grade fevers. Her pediatrician suggested they test her thyroid, but all the blood tests came back normal.

By mid-February, her symptoms intensified. She felt like she was falling apart when her pediatrician admitted her to the hospital.

“I probably saw every single specialist they have,” Jenna said about her hospital visit. The rheumatologist took 27 vials of blood on her second day there. When they tested her sed rate (erythrocyte sedimentation rate, also known as ESR), a blood test that helps detect inflammation, they said her rate broke the scale. Two days later, she got an official diagnosis: microscopic polyangiitis, or MPA.

Her immediate reaction was relief. Her gut was right: something was wrong and, now, she finally had an answer. But her relief quickly turned to fear. How was her life going to change? “I wondered if this was a life sentence. I thought, ‘Will I ever feel normal, again?’”

When Jenna received her diagnosis, she was still in high school. As anyone who’s ever been in high school knows, the pressure to belong is ever-present. Jenna was nervous to tell her friends about her vasculitis: “I was afraid people weren’t going to want to hang out with me.”

In the hospital, doctors started her on steroids. In two months, the steroids made her weight jump from 86 pounds to 135. At the height of it, she weighed 160 pounds. “This,” she said, “was the hardest adjustment.” She struggled to make peace with the unavoidable steroid side effects; she knew she needed the medication and, yet, she says she hated the way she looked. “I kept thinking it was hurting me more than it was helping me.”

At the time, she had been dating someone. As she gained weight, she said, “That relationship ended pretty quickly. I blame it on the fact that I looked very different and I don’t think he wanted to put up with that. That made me want to suppress what was going on even more.” She felt like people were judging her, adding, “I wanted to wear a T-shirt that said, ‘I’m fat because I’m on steroids.’”

Jenna wouldn’t wish vasculitis upon herself or anyone else. Still, she has found blessings in it. “When I came off the steroids, I felt like I was finally on the better side of this.” She’s off immunosuppressants now, too. She feels healthier than before. And she’s discovered her own resilience. “I realized a lot about me,” she said. “It gave me a lot more confidence. You can choose to let it knock you down or try to be better.” She’s choosing to try to make the most of it.

Her relationship to her body has changed, too. “I always used to criticize myself,” she said, “especially with body image. I would look at myself and never think I looked good enough. Now, I can look at where I was and see myself today and realize I’m doing good. There’s nothing that can stop me. I’ve realized I have it in me to believe in myself.”

Today, she refuses to let vasculitis define her, insisting she is more than her disease. She wants other young adults to feel that, too. Her message to others in her shoes? “Believe in yourself. Life is not meant to be easy, it’s going to be difficult. But you’re going to end up stronger because of it. I did.”

Jenna will return to college this month, to live on campus. She’s majoring in psychology and minoring in health medicine and human values. She’s going to join the club swimming team, returning to her childhood love. “Maybe I’ll join a sorority,” she smiled.

She paused, reflecting on life ahead. “I’m extremely ready.”

Watch out, world. Here she comes.