The importance of relationships in navigating our rare journeys

Relationships can sometimes be difficult to create, sustain, and grow within. We manage many relationships in our lives, including those with co-workers, friends, siblings, spouses, and other family members. Living with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) meant that I’d entered a new world of navigating relationships while being sick.

I was in college when I was diagnosed, and the sudden change in life priorities because of my illnesses led me to meet new people. I built new relationships with doctors, fellow patients, insurance agents, nurses, pharmacists, social workers, and more. These relationships were at the forefront of my mind at the time.

I also felt like I was on a seesaw. On one end were the relationships I had with those who knew me before my diagnosis. These people became my prayer warriors and supporters, providing me the encouragement I needed to keep moving forward. On the other end were my new relationships with medical staff and others in the healthcare world.

As I attempted to balance the two, I began to understand the importance of relationships and how they keep us moving forward. I had candid conversations with doctors about how I was feeling and what I wanted out of life. The vulnerability I had to show helped me build authentic relationships with my healthcare professionals.

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The people on my road to diagnosis

My parents were my caregivers. As I look back on the past 15 years, I realize that they’d been forced into a world of building relationships with unexpected people because they were desperate for answers about my condition. They’d listen to anyone who was willing to offer advice, and that included my pediatrician. My parents reconnected with him when I was 19 to get some answers to my symptoms.

That outreach began when my symptoms began indicating that something was wrong. My pediatrician had watched me grow up, and my parents had always trusted him. We couldn’t have known he’d be involved when I was a sophomore in college during our search for an accurate diagnosis. My mom kicked into mom-caregiver mode, and my pediatrician kicked into doctor-friend mode. This relationship was based on trust and guidance.

After obtaining several opinions from other specialists, my pediatrician referred us to a hematology specialist who eventually diagnosed me. She specialized in blood disorders and was the perfect match to help me become well again. That began to happen because of the relationship among my pediatrician, my parents, and me.

Meeting my hematologist helped to ease my nervousness and end the sleepless nights I’d spent wondering what was wrong with me. I was then able to build a relationship with my hematologist, which was crucial to my health. As I think back on it all, I wonder how long it would’ve taken for me to find a specialist and move toward recovery had it not been for my pediatrician.

Battling chronic illnesses takes you down a path you never intended to travel. I now understand the importance of relationships in all of it. I’m thankful to everyone I’ve met along the way, as they’ve all had a hand in improving my health journey.

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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