Explore these everyday stories from people living with PNH
own cup first
Self-care wasn’t the norm in my family when I was growing up. In fact, it was often considered selfish. When we were sick, we didn’t complain; we just carried on like everything was fine. We prioritized the needs of others before our own. That was so engrained in me that when I was diagnosed with PNH as an adult, those childhood lessons were very difficult to shake. Focusing on my health and my needs just wasn’t a priority.
I have 2 children, which already makes it difficult for me to make time for myself. After my diagnosis, I felt I had to continue with my daily life activities at home and at work. I soon realized that my body and mind just couldn’t keep up. I needed to make a change.
I started with very small steps like enjoying a show, doing a puzzle with my favorite music on, and even eating alone in restaurants!
On the days my body allowed me to get up a little earlier, I would make my favorite cup of tea and enjoy the quiet “me” time. Then I got a bit bolder and started saying no to social gatherings to give myself some extra time. At first, it felt a little odd, and I felt guilty. But I quickly realized that the more time I took for myself, the better I felt emotionally.
Another thing that made a huge difference was asking for help at home. It took practice – telling my family when I wasn’t feeling well was something I struggled with. I’ve always tried to do everything on my own because moms always have to feel 100%, right? Wrong. I started realizing that if I didn’t ask for help, it wasn’t only hurting me; it was hurting my family.
Is self-care always easy? No. There were times when I’d feel guilty and like I wasn’t doing enough. But I had to stop listening to that negative voice in my head because it was only making me lose focus on the good things in my life.
With therapy, daily self-care, and practice, I reminded myself that I was helping my family by taking care of me.
Now, I spend time with my family on my good days and don’t hesitate to tell them when I need my own time on bad days.
Before I was diagnosed, I never knew that making myself a priority could help in so many ways. To help others, you first must help yourself. I live by this idea now. We can’t go around life serving from an empty cup. I know now that I deserve to do things for myself as much as I do them for others. And I’ll keep working at it because this whole thing is a journey.
The above represents a real person 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.