What I’ve learned about navigating relationships while living with PNH
I learned to have hard conversations with love
Living with paroxysmal nocturnal hemoglobinuria (PNH) has changed so many aspects of my life, from how I care for my health to how I advocate for myself in the doctor’s office. But one of the most deeply personal shifts has been how I manage my relationships — with my children, my partner, extended family members, friends, and even co-workers. Chronic illness doesn’t just affect the person living with it, it also ripples through every connection we have.
After my diagnosis in May 2017, I went into survival mode. Between managing fatigue, medical treatments, and the mental toll it had on me, I barely had space to think about anything else. I felt guilty when I had to cancel plans, when I wasn’t as present with my children as I’d like to be, or when I didn’t return messages. I feared I was becoming a burden or being left behind in the lives of those I loved.
That guilt took a toll on my relationships. I withdrew, thinking I was protecting others from my pain. But I was just isolating myself. In time, and with a lot of reflection, I realized that letting people in — being vulnerable and honest about what I was going through — was a form of strength. It was part of self-advocacy. When I began explaining my limits, opening up about my symptoms, and asking for help, my relationships were actually strengthened.
I learned to have hard conversations with love. I told my kids, who are now 13 and 14, why some days I can’t do what other moms might. I asked friends for patience and understanding. And I learned that true connection isn’t about pretending everything is OK; it’s about being real, even when things are messy.
Of course, not everyone will understand, and that’s hard. Some relationships have faded, and I’ve had to accept that not everyone is meant to stay. But the people who remain — the ones who show up with compassion and ask how I’m really doing — those bonds are stronger than ever.
Living with PNH means dealing with constant change. But it also means learning how to love more honestly, connect more deeply, and communicate more clearly.
If you’re navigating your own journey with chronic illness, know this: Your story deserves to be heard, and your relationships — just like your health — are worth fighting for. For more support, explore resources from Mental Health America, which offers tips on managing emotional well-being, or visit the Rare Disease Legislative Advocates website to find ways to connect and advocate within the rare disease community. The Global Genes platform also provides education, awareness, and support for individuals affected by rare diseases.
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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