Support from others is key in combating my negative thoughts
In the darkest moments with hemophilia, a loved one's presence is vital
I often tell people that my mind is a dangerous neighborhood and that I should never venture into it alone. This usually gets a laugh, which the comic in me appreciates, as I often say it to lighten a difficult conversation. A little release of tension doesn’t hurt anyone.
But while the comment prompts some grins and giggles, I feel a deep sense of regret and shame concerning how I treated my sons when they faced complications related to hemophilia. Both of my boys are now men, but the scars of failing to do my best while treating their internal joint and muscle bleeds never seem to fade. I’d often grow angry at myself when I couldn’t access a vein with the first poke, and I’d think, “My poor guys deserve better than what I can give them.”
In these scary corners of my mind, my thoughts grab me on the street and try to convince me that I am not a capable husband, father, friend, or caregiver. Instead of celebrating my successes, I dwell on my perceived failures. There is no respite from the darkness I see and hear. It can overwhelm me, making the idea of good mental health seem like a pipe dream.
The questions I had surrounding raising children with bleeding disorders used to hold me hostage. Even today, I think back on my sons’ lives, and I ask, “Did I do enough to set them down a path of self-advocacy?” Unfortunately, I answer the question with self-doubt and traverse a mental path that does nothing to relieve my guilt. I search for an affirmation that never comes.
Finding hope on the journey
As I start down a mental road to nowhere, something repeatedly saves me. I confide in my wife, Cazandra, about my feelings, and she ventures into the dark corners of my mind with me before drawing me back to reality. Her support, especially during my lowest moments, shows me how vital our loved ones are to our mental health. She reclaims me from the “stinking thinking” that captures my brain.
My lovely wife reminds me that I am not the many names that the darkness calls me. Her comforting words drown out the noise of shame and regret, infusing me with hope and promise. She is the person I like to have by my side when confronting difficult situations. Her strength reshapes the dangerous neighborhood, transforming it into a place of beauty and love. With her help, navigating the challenges of raising children with hemophilia isn’t so scary and lonely.
Time continues to reveal the depth of our commitment to each other. My wife rescues me, and in return, I come to her aid. As partners, we hold each other up and remind one another that what we hear in the darkness is not the truth. Cazandra and I share our story in the hope of encouraging others and showing them they are not alone. Support can dispel darkness while fostering resilience and hope.
My mind may always be a dangerous neighborhood, but my life doesn’t have to be doom and gloom. Perhaps fear is a reminder not to travel alone. Even in the darkest times, the journey toward self-compassion can lead to hope. I keep learning the most significant lesson: It is OK to ask someone to walk with us when times get tough. We find strength and wholeness through the 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 consult your physician or another qualified healthcare 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.
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