A letter to those new to a PNH diagnosis, from someone who gets it
What I've learned after 15-plus years of living with rare blood disorders
I get it. That’s the first thing I want any patient reading this column to know. I understand what you’re going through; you are not alone.
After my diagnoses with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I experienced many emotions, including loneliness. Hearing that my blood disorders were rare only intensified the feeling that no one would ever understand what I was facing.
When I received the diagnoses on a Friday afternoon, I felt paralyzed. What was I supposed to do? How was I supposed to keep moving forward?
I took the weekend to sulk, cry, and lie in bed watching TV. I knew I had a big meeting scheduled with my doctor for Monday morning to learn about the treatment options and start the road to recovery.
I often talk about this part of my story because it was so significant. I didn’t realize it at the time, but as the haze faded and reality set in, I recognized how crucial it was to embrace all my feelings. Many times, we suppress emotions we don’t want to face. But no matter how hard we try to ignore them, they always rise to the surface, forcing us to confront them.
Embracing my emotions helped me survive the weekend and ultimately benefited me in the long run. It’s OK to not be OK. Not every day is fun, perfect, or the best day ever. It’s perfectly fine to say, “Today sucks!” What we must avoid is remaining in a sad, sulky state of mind.
With that in mind, I set a deadline for myself. I had until Sunday night to be selfish and sad, and watch any movie or show I wanted. But on Monday, I’d start my fight.
At first, I thought that the journey to feeling better and returning to my normal life would be quick and straightforward. At every appointment, I hoped my doctor would say that my tests were normal and I wouldn’t have to return. Instead, I continued to receive disappointing reports that left me feeling sad, as if I were failing at life.
That was when I decided to no longer set any expectations for my appointments, which proved better for my mental health. Then, when I finally did receive good news, I was able to truly celebrate and be present in the moment.
I share these stories in hopes of helping anyone who is new to a PNH diagnosis. The days may feel long, but as someone who has battled illnesses for more than 15 years, I can tell you that this diagnosis is not the end. Find things to look forward to, enjoy time with those who mean the most to you, and learn life lessons that will aid in your growth. You have a beautiful life to live. Focus on yourself, and don’t sweat the small stuff along the way.
You’ve got this!
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.
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