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.

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.

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!