5 things I wish I knew after my PNH diagnosis
These tips would've helped me in the early days of my health journey
You never think you’ll face health issues until you do. I wasn’t at all prepared for my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, and the news filled me with worry. I was thrust into a world of unknowns and forced to learn about two rare blood disorders I’d never heard of.
As my mind filled with questions, I became anxious and wished I had a road map for what was to come.
The following are the top five pieces of advice I wish I’d known upon my diagnosis. I share them in hopes of helping others navigate a road filled with bumps and distractions. If I’d known these things from the start, I would’ve felt more comfortable on my health journey.
1. Take care of your mental health.
After my PNH diagnosis, I faced not only a physical battle, but also the mental struggles brought on by sudden changes in my life. I went from living a normal life — going to work and following a routine — to spending most of my days in and out of the hospital.
That took a toll on my mental health, but I soon learned that caring for my emotional well-being helped in my fight. I worked daily to not give in to negative words or thoughts; instead, I cultivated positivity by searching for uplifting quotes, listening to podcasts, and reading.
2. Lean on caregivers, family, and friends.
I didn’t know how much help I’d need when I was diagnosed. I didn’t always have the physical, mental, or emotional capacity to complete basic tasks. Plus, PNH symptoms made it difficult to know whether I’d have a good or bad day.
Having a reliable group of people around me lessened my stress. They also supported me when I had to call the insurance company to discuss a charge or schedule a doctor appointment.
3. Learn how to navigate insurance and find financial help.
Calling insurance companies, ordering prescription refills, and finding financial assistance can feel like a full-time job. I had to find ways to manage these critical tasks without letting them overwhelm my everyday life, especially while managing my blood disorders.
I relied on my caregivers for assistance, but I also took my time with these long and stressful tasks. If I found myself feeling overwhelmed, I’d take a moment to regroup before diving back into problem-solving.
4. Take the time to learn about your illness.
After my diagnosis, I noticed that medical staff often communicated in jargon I didn’t understand. I didn’t know what terms like hemoglobin, creatinine, and immunoglobulins meant. I asked questions and became more informed.
Understanding the terminology related to my illnesses helped me communicate more effectively with my medical team. I knew the right questions to ask and got better at navigating the healthcare system. This knowledge helped me better manage my health, resulting in me feeling better.
5. Celebrate the small wins.
I had to give myself grace. I felt more like myself by celebrating small wins, such as my blood counts improving or a wave of fatigue finally passing. I infused positivity into the days when I was faced with overwhelming bad news. To take it a step further, I celebrated by indulging in things I love, like cooking my favorite meal, getting a milkshake, or buying an item that had been in my Amazon cart for the last month.
What do you wish you’d known after your PNH diagnosis? Please share in the comments below.
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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