Planning a trip and traveling somewhere new can be exciting, but also overwhelming. I have to ensure I’ve packed everything, planned a fabulous wardrobe, and tied up any loose ends before my departure. My two chronic illnesses only add to the stress of travel. Being diagnosed with paroxysmal…
In 2016, I received the news that changed the course of my life, words I never thought I’d hear: “You’ve been diagnosed with two chronic illnesses.” Turns out I was battling both aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). My thoughts were filled with confusion and questions about…
In 2019, I gave a TEDx talk on relationships with chronically ill patients, titled “What your sick friends and family really need most from you.” Using the correlation of food, I provided what I hope was a thought-provoking speech on what it means to befriend a sick person. My…
There was a brief period when my parents and I counted how many times I was poked with a needle and how many medications I took each day. On my way to appointments at the hospital, I’d begin looking for a vein for the phlebotomist to draw blood. As…
When you are diagnosed with a chronic illness, no one hands you a manual telling you how you’ll feel. There is no explanation about the emotional journey you will embark upon. In addition to your health challenges, an important part of the battle will be learning how to…
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…
It’s so easy to sit scared and frustrated when diagnosed with illnesses like mine, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). Together they brought back and heightened my sense of fear. As brave as I seemed on the outside, inside I was dealing with anxiety and learning…
One night as I was lying in a hospital bed, across the hall was another patient whose young son was running through the hallways. For some reason, the doors to both of our rooms were propped open, and I could hear the patient and her husband whispering. They were trying…
As fatigue took hold of my body, I’d lie in bed and think how lazy I was for not getting up to start the day. Early in my health battle, I had trouble being OK about not being OK. I thought that to become well faster, I had to get…
Note: This column describes the author’s own experiences with anti-thymocyte globulin and Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When you were diagnosed with a chronic illness, what questions ran through your mind? Did you begin to picture…
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