Adjusting to my new normal as I battle PNH and aplastic anemia

3 lessons that have helped me accept my new life with chronic illnesses

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by Brandi Lewis |

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Recently, I heard someone say they were facing a “new normal” with paroxysmal nocturnal hemoglobinuria (PNH). It made me think about the many ways PNH has affected me, including forcing me to adjust to a new way of life. I am guilty of sometimes thinking that my life will one day go back to “normal” — as if battling PNH and aplastic anemia is a dream I’ll wake up from.

As I think about my new normal, I compare it with my life before diagnosis. I was carefree, young, learning more about myself, and building a career and relationships. As my health declined, I had to adjust to my parents taking care of me. I had to learn how to once again be dependent on someone, as I didn’t even have the strength to speak to doctors at times.

I vividly remember working in an office, answering phone calls, speaking to co-workers, and sorting through daily emails. Seemingly in an instant, I was lying in a hospital bed receiving a blood transfusion. There were many occasions when it hit me hard that this was now my life.

Reflecting on all of this, I thought I’d share a few things I’ve learned as I work to accept my new normal.

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3 important items that help me manage PNH and aplastic anemia

1. Change is hard

The word “change” sends chills down my spine. It can be hard to adjust to a new way of life.

Illnesses bring about much change — often suddenly and without warning. Finding balance helps me navigate these transitions. For example, after getting through a long doctor’s appointment, I’ll celebrate the small win with ice cream. This makes change an easier pill to swallow.

2. Accept the things you cannot change

I still battle to accept my new normal, but it’s important to recognize that my life is different now that I have chronic illnesses. Although I work hard to improve my health, symptoms like fatigue, blood in my urine, and bruising remind me that I can’t change the fact that I have PNH and aplastic anemia.

I don’t want to become complacent, so I must check in with my body regularly, spend time resting and recharging, and keep a record of my symptoms and where I’m at in my health journey. Accepting my diagnoses enables me to better care for myself.

3. No matter what, have some fun

Because health issues are a serious matter, it can be easy to remain in a place of seriousness. I picture patients with stern expressions sitting in exam rooms and writing down every word the doctor says. As I adjust to my new life, though, I have learned the importance of having fun. I maintain my sense of humor and laugh at the silliest things. I stay lighthearted when I can and aspire to make great memories.

Have you had to adjust to a new normal? Comment below if there’s a lesson you would add to the list.

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.