Struggling with loneliness in the early days of my sons’ hemophilia

Every week, I lead the pastoral prayer at church. It’s a moment to share what brings us joy and what weighs on our hearts as a congregation and a community. I always pray for the unhoused, the hungry, the grieving, and our country. But there’s one group I often mention that many overlook: the lonely.

When we think about loneliness, we often picture those who have lost a spouse or a close friend. Their emotional bond is gone. There is also social loneliness, where people without a wider circle of friends or community long for connection. Life’s joys are often greater when shared, and when that is missing, it can feel empty.

When loneliness lasts for a long time, it can become chronic. You might even feel lonely in a crowd, and the despair can be overwhelming.

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I know what loneliness feels like. When my sons, Julian, 29, and Caeleb, 20, were diagnosed with severe hemophilia as infants, those were some of the darkest days of my life. Even though I had a strong marriage, family, and friends, the fear and grief from each diagnosis led me into a deep depression and loneliness that was hard to escape.

Being pregnant with Julian was exciting. Morning sickness made each day unpredictable, and my emotions were all over the place. I often limped because of a painful sciatic nerve. Still, my husband and I were filled with excitement. Hearing the heartbeat and feeling him kick for the first time were moments I treasure. I never imagined my son would have a chronic illness, and neither did the doctors.

When Julian was diagnosed at 3 days, my joy quickly turned into confusion, anger, guilt, and despair. Even though my loved ones tried to encourage me, I became depressed and withdrew. I only left the house for work and errands. Even when I was with my students or family, I still felt alone, convinced that no one could understand my fear, anxiety, and guilt.

Thankfully, a family member kept urging me to take my baby out of the house. It took a lot of encouragement, but the more I went out with Julian, the less lonely I felt. I began to see that I had a support system around me, and I hadn’t been using the help they offered.

I didn’t think hemophilia ran in my family, so I was sure my second son wouldn’t have a bleeding disorder. But I was wrong. Caeleb’s diagnosis of severe hemophilia was even harder than Julian’s. I remember thinking, “I can’t do this again.” The shock was overwhelming.

After Caeleb was born, I developed postpartum depression, which was frightening. I didn’t feel a connection with my newborn, which was completely unexpected. I was embarrassed and ashamed. I didn’t know anyone else who had gone through this kind of depression. It was awful. I felt like I had done something wrong and worried I might never bond with my baby.

I was overwhelmed by guilt, fear, anxiety, and dread, but I felt I couldn’t share these feelings with anyone. Loneliness took over.

Finding grace in the darkness

But even in that darkness, something small and steady remained — a thread of grace I couldn’t see clearly at the time. It showed up in people who refused to give up on me, who kept showing up and embracing me when I wanted to hide. It also appeared in quiet moments of courage, like getting out of bed, holding my baby, or stepping outside.

Loneliness grows in silence, but it fades when we talk about it and share with others. Over time, I met other parents whose children had hemophilia. They understood and faced the same struggles and fears. In their stories, I saw parts of my own. Being with them made me feel less alone.

Now, when I stand to pray, I think of those who are quietly suffering, whether they are sitting in the pews or watching from a distance, unseen and unheard. The lonely are not always easy to spot. They smile, they serve, they show up, but inside, they are hurting.

So I name them. I pray for them. I trust that God meets them in that hidden place and surrounds them with a love that is stronger than isolation. I have felt that love find me, even when I didn’t know how to reach for it.

I’ve learned that even in the deepest loneliness, that thread of grace appears through the love and presence of others.

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.