Explore these everyday stories from people living with PNH
Fear immediately entered my body when I was diagnosed with PNH 7 years ago. I felt my body go stiff, in shock, with so many questions swarming through my mind. What would my future look like? What symptoms would I experience? Would my symptoms get worse over time? Could I find a treatment plan that worked for me? It was all so overwhelming.
Fear after a diagnosis is almost inevitable. But I’m a fighter, and I wasn’t going to let fear win. I had to show it who was boss. I always say this fight is mental, physical, and emotional – here’s how I fought those battles.
First, I changed my mindset. As the negative thoughts entered my mind, I created a plan to overcome them and cultivated a more positive outlook on life. I wrote out affirmations and said them out loud every day. I wanted to hear myself say them and really take in what I was promising myself.
Picture me standing in my bathroom, staring at myself in the mirror, saying, “I am strong. I am beautiful. I am healed. I will live a long, healthy life.”
As I mumbled the present tense words to myself, I began to feel empowered. And that feeling grew day by day.
I practiced gratitude and wrote down what I was thankful for. I had a journal dedicated to me, listing, “I am thankful for my family, doctors, being alive, being present and having a positive mindset, being able to fight another day,” and so on. After writing my list, I would read it aloud to remind me that even though this moment might be difficult, there are always things going right in my life. Keeping a journal helped me look back on those tough moments and take pride in all that I have accomplished, all that I’ve persevered, and all courage and resiliency I’ve built along the way.
Conquering fear is challenging; sometimes, you just have to feel those feelings. That’s not easy, either. There were days I spent crying in my bed. Days where lonely thoughts continually entered my mind. Days where I didn’t have the energy to fight it off. But I gave myself grace in those moments when I needed to sulk in solitude because I knew it would help me come back stronger. Grace was an important lesson that made it okay to feel my emotions – one that I continue to use today.
Having a care team you trust and can partner with is important for making you feel comfortable and secure. I know it helped me move past my fear. I created a partnership with my doctors that consisted of having an open dialogue, being honest, feeling at ease giving my opinion, and cultivating trust. For the team to work positively, I knew both sides had to be honest, including myself.
Having that solid relationship with my doctors helped me feel comfortable being more open and honest, which only strengthened our partnership.
Fear can be paralyzing and pull you into a state of negative emotions if you let it. But I showed it that I was in charge, not it, and in doing so, I have gained back hope and optimism about my health and future.
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.