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What does PNH brain fog feel like?

Living with paroxysmal nocturnal hemoglobinuria (PNH) for nearly eight years has shaped how I show up in every part of my life. It’s a quiet battle, mostly invisible to the outside world, but inside, it’s a constant balancing act. One of the most difficult and misunderstood symptoms I…

How hospital staff, other patients supported me after my diagnosis

Recently, I participated in a paroxysmal nocturnal hemoglobinuria (PNH) panel discussion where patients shared stories about living with the blood disorder. Many mentioned that support from hospital staff helped them build a community they didn’t know they needed. After being diagnosed with aplastic anemia and PNH, I…

The challenges involved in living with invisible illnesses

When people picture someone with an illness or disability, they often visualize a wheelchair, medical device, or some other visible sign that the person is facing health challenges. But there’s not always an external indicator that someone is living with an illness. As a Talkspace article explains, “An invisible…

When I share my story, I’m helping others — and myself

It takes courage to be vulnerable, especially when sharing your story with strangers on the internet. After being diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I’ve seen the impact storytelling has had on my life. We’ve all experienced moments that made a monumental impression on us.

Speaking up: The power of self-advocacy with PNH

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I felt powerless. I had no control over what was happening to my body and found myself at the mercy of doctors and medical jargon I barely understood. At first, too overwhelmed to push for my own needs,…

When depression hits a person with a chronic illness

Depression seeps in like a snake, slithering slowly as it makes its way into your life. You feel it there, but only a little. Then, one day, the full force hits you. Depression has a way of robbing you of your joy and happiness. It becomes regular to miss events…

How my PNH diagnosis affected my mental health

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I thought the biggest battle I would face was the physical one. I was wrong. While the fatigue, blood clots, and pain were undeniably difficult, nothing could’ve prepared me for the mental and emotional toll this rare…