Explore the experiences of friends and family members supporting someone with PNH
Finding joy so I can
be a better caregiver
Hi everyone! My name is Lynn, and I’m a caregiver for my son Eric, who was diagnosed with PNH about 2 and a half years ago. I want to share with you how to rediscover the joy of saying “yes” – to get back to the things you enjoyed before becoming a caregiver and to encourage your PNH loved one to do the same. It’s been an important lesson that has helped me tremendously both as a caregiver and mother.
Being a caregiver for someone with PNH has its unique challenges. As a mother, I wasn’t quite sure how to process Eric’s needs. I felt like I was lost at sea and wanted to fix it and make him feel better – and knowing that wasn’t possible was overwhelming.
There were a lot of obstacles to entertain, process,
and manage, and every day is different.
Since Eric’s diagnosis, I’ve learned that to care for him, I need to ensure I’m also caring for myself. It became essential for me to get back to activities that I once enjoyed so I could be a better and more well-rounded caregiver for Eric. I returned to my favorite hobbies, like swimming and gardening. My hobbies made me feel better physically and emotionally as I dealt with my feelings around his diagnosis and offered daily support to him on his journey.
I also found that spending more time as a family,
whether it was dinner together, outdoor activities, or
holidays, helped us to stay connected and reminded us
of what a strong family unit we are.
All of this has helped me manage my feelings. Now, whenever I feel overwhelmed or have self-doubt, I go back to what I’ve learned – focus on doing something that brings you joy, and by doing that, you’ll not only feel better, you’ll also be a better caregiver.
This quote always motivates and reminds me to care for myself, too: “An empty lantern provides no light. Self-care is the fuel that allows your light to shine brightly.” (Author unknown)
Take good care of yourself!
The above represents a real person caring for someone living with PNH, telling their story in their own words. This individual was compensated by Apellis for the time required to share their story. Every person’s experience with PNH is unique. This story does not include individual treatment or medical advice. You should speak with your doctor about questions you may have about PNH, its symptoms, and treatment.