The importance of finding peace while living with PNH

I felt like my life was in shambles after I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the blink of an eye, I went from living on my own and working a normal 9-to-5 schedule to living at home with my parents and not working at all. The sudden change was too much to bear at times.

I was frustrated. Most of my daily conversations were with medical staff, and I’d become all too familiar with overnight hospital stays. It’s not good when you know which hospital foods are tastiest and what not to order for your daily meal! My days were consumed by doctors, nurses, social workers, and talks about how I felt. As a young woman in my 20s, none of that was ideal.

Fighting for my life forced me to understand my illnesses and listen to my body. I realized I wasn’t fighting only a physical battle, but a mental one, too. If I stayed in this rut, it’d take me longer to reach my health goals. If I remained blinded by negative emotions, I’d waste time and get in the way of my own life.

I didn’t want that! I wanted to get through this tough battle with positivity. That meant I had to change my emotional state, which was easier said than done.

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How I found peace

Achieving a more positive state of mind required finding peace with my illnesses. A storm was brewing in my mind and body, and I had to quiet that noise.

First, I had to accept this stage of my life. I took a hard look at what was happening — the good, the bad, and the ugly. I told myself, “It is what it is.” At the same time, I reminded myself that this period of illness wouldn’t last forever.

After reaching acceptance, I questioned what would bring me joy. Without peace of mind, I was in a negative headspace. To counteract this, I had to find things that would invite positive feelings. It could be as simple as painting, drawing, or writing — anything that brought me happiness.

Lastly, finding peace with my illness meant creating goals for where I wanted to be and working toward them. I love lists, so writing down things I wanted to achieve and checking them off brought me relief. Some of my goals were living on my own, building relationships with people outside the hospital, and spreading awareness to help others in my position.

Finding peace took time, as it forced me to examine my emotions and learn how to calm the storm within. As I eventually reached a place of peace, even with two rare blood disorders, I saw that I could accomplish hard things.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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