Learning to speak up for yourself and use your voice is empowering. When I was diagnosed with PNH, I felt like I wasn’t only battling my disease, I was also fighting to figure out who I was and what mattered most to me. I was surrounded by great doctors and caregivers with wonderful advice, but it was important for me to learn how to advocate for my health and myself. I found the easiest way for me to do this was by giving voice to my feelings.

I remember one morning when it seemed like I was finally able to do this. I was sitting in a hospital room, and I felt nauseous. When I told the nurse, she wanted to give me medicine, but I had already taken several medications and really didn’t feel like that was the right solution for me in the moment. Then, without much effort, I found my voice and said, “No.” It came so naturally to me! I knew what my body needed and was proud I was able to share what I wanted openly.

It may seem small or insignificant, but in that moment, I felt empowered to not only express my feelings, but also to make my own decision.

Here are 3 ideas that helped me. Maybe they’ll help you, too!

1. Trust your gut

There was no PNH specialist in my hometown who was well-versed in managing my PNH. I knew I had to find a great team of doctors who understood me, my needs, and the nuances of PNH. My gut told me to research further and create a team of doctors that I could partner with to help me throughout my journey. It worked. I found a blood disorder specialist who partnered with my local doctor to find the best treatment plan for me.

2. Start small

When I began advocating for myself, I started in small but meaningful ways. For example, I researched PNH and started asking my doctor questions. As I grew more confident, I used my learnings to talk to my doctor about changes I wanted to make. These moments were small on their own, but they built up to me being comfortable proactively talking to my doctor. I was gaining confidence little by little. Over time, I began to advocate for my treatment plan, strengthened relationships with my doctors, and spoke up when I felt passionate about something. I was never scared. In fact, I became fearless in advocating for me.

3. Let others help you

My caregivers and family were great to lean on when I didn’t know how to express myself. They had watched me get through every moment living with PNH, so they understood how I felt and what really meant the most to me. On the days I felt tired and weak, I leaned on them to speak up for me. They’re trusted partners in this journey, and I couldn’t do it without them. Finding your voice takes time, but the empowerment you feel when you confidently speak up for yourself is unmatched. I hope you experience this, too.