Why I didn’t research PNH online after my diagnosis

Where this columnist turned instead for information about her disease

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by Brandi Lewis |

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Being diagnosed with an illness can result in a plethora of emotions. We may feel vulnerable, hurt, confused, sad, raw, or scared. With tensions high, it can be hard to protect our mental health while gathering information about the disease.

After I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), my mind was swirling with “what ifs.” I could feel my body tense whenever I dealt with questions about treatment options and my future.

As I lay in bed staring at the ceiling, it was so hard not to grab my phone and start Googling aplastic anemia and PNH. I fought this urge every time because I knew that my conditions were serious, and I didn’t want to come across an article that listed severe symptoms, or worse, a timeline of how long I had to live.

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Spoiler alert: That PNH diagnosis wasn’t a dream

I knew I wouldn’t take this kind of news well. Being as dramatic as I am, I’d envision myself sitting on the side of my bed, tears welling up, staring at my phone in confusion. I didn’t want to think about all the possible symptoms I could experience. I made a pact with myself to protect my mind at all costs.

If you’ve ever heard the Chinese proverb about being careful of your thoughts, it explains why I was so determined to protect my mental health. I knew how powerful my mind was, and if I was going to tackle PNH, I had to first win the war in my mind.

How I gathered information about PNH

Since I didn’t trust myself to search the internet for information, I gave this task to my caregivers, better known as my parents. Caregivers play an important role in patients’ lives, and I was grateful to have such a strong team around me. I remember sitting down to eat with my parents and telling my mom, “I need you to research my illness for me. I don’t trust myself to look online and gather details.”

My mom replied, “Oh, I already did.”

For my own research, I relied on other patients’ experiences and my doctors’ expertise to help me keep fighting. Because everyone’s diagnosis story was different, I realized that we all respond differently to health concerns, which helped me avoid overthinking things. I soaked up patient stories and took notes as reminders. I loved every minute of learning from others.

I have been surrounded by great doctors who continue to teach me about my disorders, as well as ways to manage them. I learn something new at every appointment and am able to take that information home with me.

I didn’t research my illness online because I made a choice to prioritize my mind. I knew winning the mental war would help me in the fight with my body. Leaning on my caregivers helped me stay focused on my goal of one day hearing the words, “You’re in remission.”

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.