5 ways I protect my mental health while living with PNH

How laughter is the best medicine, comparison is the devil, and therapy helps

Brandi Lewis avatar

by Brandi Lewis |

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When I heard the words “you’ve been diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria” (PNH), my body quickly began working. My mind, however, stayed in a state of confusion. The sudden, unwanted change in my life affected my mental health. My mind couldn’t keep up with my body, and my body couldn’t slow down for my mind.

I went from working in a corporate setting to sitting in a doctor’s waiting room three to four days a week. My friend group changed from folks I knew from high school and college to people I’d met in the hospital who regularly updated me on their progress. I developed tunnel vision to hear the words “you’re in remission.”

Chronic illnesses have mental, physical, and emotional consequences. A 2022-2023 Sharecare research survey concluded that depression occurs five times more often in chronic illness patients than the general U.S. population, and anxiety is two times as high.

To address my own mental health concerns, I practice five methods to protect my mind.

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A childhood lesson for days when PNH symptoms are difficult

1. I give myself time to feel my emotions.

In the beginning, I subconsciously pushed my emotions aside. I then realized that if I was going to strengthen my mental health, I first had to be aware of my feelings. I let myself feel them all, including sadness, frustration, hurt, worry, and fear. Lying in bed crying helped me give space and time to my emotions so I could later fight to become well.

2. Therapy heals my chronic illness trauma.

Therapy wasn’t the first thing I thought about when I wanted to reach remission. I had a one-track mind, so therapy began later in my fight. Speaking with a therapist helped me heal the many layers of pain I experienced. My therapist helped me recognize the importance of talking through my emotions and striving to be better.

3. I recognize that comparison is the devil.

Comparing my health with others’ set me up to feel worse about myself. I made those comparisons so much that they became second nature. I wanted the quick fix where I snapped my fingers and became well. After recognizing my mistake, I quickly told myself to stop. As everyone’s journey is different, I slowly began to recognize that my story is my own, and I’d be better off working harder on myself rather than looking at others’ lives.

4. Putting pen to paper released my emotions.

I used journaling as a form of therapy on bad days. When my emotions were heightened, I had so many thoughts going through my mind. Sitting down in a relaxing, safe area, I was able to write out how I was feeling. This release made me breathe easier. As ink stained the paper, coupled with tears, I’d write and write until I felt better.

5. I practiced laughter as the best medicine.

Laughter was a way for me to hold on to hope. If I could laugh when the days were long and tough, I was reminded that I could make it through. I felt a sense of peace in my laughs, and it helped calm the storm for a little while. Laughing was a great way to bring my emotions to a positive, peaceful place.

Mental health is important, and finding ways to protect it improved my emotional strength. I still use these methods today!

Please let me know in the comments below how you protect your mental health.

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.