Maegan Voss has learned that each day can be different when living with paroxysmal nocturnal hemoglobinuria (PNH). Sometimes, if they push too hard, that can mean a medical crisis. “I’ve definitely gotten used to being in emergency rooms with PNH,” Maegan said.

“But other days when I’m feeling good — which I really try to take advantage of, because they are few and far between — I like to play bass and paint and fill my day with things that make me value my brain and my body and my creative self,” they shared about their journey with PNH.

‘I Do That Push and Pull’ of Self-Care

Maegan, who uses the pronouns they/them, has found creative ways to make the best out of even the worst days, such as visits to the ER. “I have this ritual where every time I go to the emergency room, I’ll start immediately getting on my phone and finding the cutest Garfield that I can find. And it just is a special way of me modifying an otherwise really stressful situation,” they said, describing finding comfort in the popular comic strip character Garfield the cat.

“A lot of being disabled is doing that push and pull between, yes, this is hard, but I’m also taking care of myself.”

— Maegan, a myPNHteam member

Seeing the good in the challenges that come with PNH has helped Maegan cope with their ups and downs. “I think a lot of being disabled is doing that push and pull between, yes, this is hard, but I’m also taking care of myself. And it’s beautiful that I get to do that, and I get to have that relationship with my body — and with Garfield,” Maegan said.

‘I Ran Out of Sick Leave’

Early on, Maegan had a hard time knowing their limits while living with PNH: “For a while, I felt like I was trying to stick, like, the round peg in the square hole. I was trying really hard to push my body to do things that it didn’t feel comfortable doing.”

Maegan was working a full-time job as an archivist when they developed PNH, but the condition eventually became too much to manage. “I actually ran out of sick leave because I was having these repeated times of having to go to the emergency room and go to doctors, and I couldn’t continue working,” they said.

Since then, Maegan has recognized the importance of listening to their body and getting enough rest. “My usual day with PNH is I wake up and sometimes it’s later, sometimes it’s earlier, but my body will let me keep sleeping if I’m not woken up,” they said. “I can sleep all day if I had to. I wake up and I eat, and then I go back to bed.”

‘Art Saved My Life’

Along with playing music, making art has been an important part of Maegan’s life with PNH, particularly painting: “I would sit outside on my porch and paint every single day, and it’s really saved my life.”

“I like to play bass and paint and fill my day with things that make me value my brain, my body, and my creative self.”

— Maegan, a myPNHteam member

Maegan has discovered that creative outlets are key to both their psychological and physical well-being. “It makes a huge difference as a disabled person to have an outlet,” they said. “I try to honor rituals that make me feel grounded in my body.”

Talk With Others Who Understand

On myPNHteam, the social network for people with paroxysmal nocturnal hemoglobinuria and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with PNH.

Have you found outlets that help enrich your life while living with PNH? Share your experience in the comments below, or start a conversation by posting on your Activities page.