Navigating Relationships in Pain
Chronic pain doesn’t just affect the person living with it—it ripples outward, touching everyone in your life. The relationships I’ve had throughout my life have been shaped by this invisible burden, tested by the weight of symptoms no one else can see. Some have broken under the pressure. Others have survived, though not without scars.
The Weight of Being Misunderstood
The hardest part about living with this condition isn’t the pain itself—it’s the isolation that comes from not being understood. When you’re constantly told your symptoms are made up, when doctors dismiss you as a liar, when even your own mother believes the doctor over you, you learn to stop explaining. You learn to carry it alone.
I spent decades in silence, hiding my pain because I’d been taught that no one would believe me anyway. The choking incident in grade school, when Dr. Fishbaugh told my mother I was making it up—that was the moment I learned that even the people who were supposed to protect me would turn away when the truth was too inconvenient. I was punished for lying about something that was literally killing me.
That lesson stayed with me. It shaped every relationship I’ve had since. When you learn early that your pain isn’t real to others, you stop sharing it. You stop asking for help. You stop expecting understanding. And over time, that silence builds walls between you and the people who care about you.
The Grief That Shaped My Family
My mother carried guilt her entire life. She believed she had caused my sibling’s death—the sibling I never had the chance to know—by moving a washing machine while pregnant. She never knew the truth, that the ACM and PFAC that shaped my life had likely ended my sibling’s before it even began. When the physician assistant finally explained it to me, I realized my mother had been carrying a burden that wasn’t her fault.
What the doctors did not understand—what they could not see on their static MRI scans—was the hydrodynamic catastrophe unfolding inside my skull. The arachnoid cyst and the Chiari malformation were not just sitting there passively. They were actively obstructing the flow of cerebrospinal fluid, creating a destructive pressure that pulsed with every heartbeat. My brain surgeon would later explain it to me like a blueberry stuck in a straw: the cerebellum was the blueberry, the spinal canal was the straw, and the cerebrospinal fluid that should flow freely between my brain and spine was being choked off. It was not about millimeters of descent. It was about the fact that the fluid dynamics were completely obstructed, creating a destructive suction that damaged everything it touched.
She died without ever knowing the full truth of our health. I grieve for her, knowing she carried that guilt to her grave. I grieve for the sibling I never met, someone I feel a strange and unexplainable connection to, as if we had shared something profound before I even knew it. There’s no book, no guide on how to grieve for a life that could have been.
That loss shaped our family in ways we never talked about. The guilt, the grief, the silence—it all wove itself into the fabric of who we were. And through it all, I was fighting a battle no one could see, carrying a burden no one understood.
Finding Strength in Faith
Through all of this, my strength hasn’t come from people’s understanding. It has come from my faith in Jehovah, who has always seen the battle I’ve fought. He knows how we are formed, as Psalm 103:14 says: “For he well knows how we are formed, remembering that we are dust.” Jehovah knows the limits of my body, my pain, and the quiet sacrifices I’ve made, and in that knowledge, I find comfort.
Jehovah doesn’t ask me to be more than I can be. He doesn’t expect me to fight a battle without giving me the strength to endure it. And even though the world may not see what I’ve carried, Jehovah has always seen it. That’s the strength that keeps me moving forward.
Faith has been my anchor when relationships have faltered, when understanding has failed, when the weight of this invisible burden has felt too heavy to carry alone. It’s not a replacement for human connection, but it’s been a constant when everything else has been uncertain.
The Relationships That Survived
Not every relationship has broken under the pressure. Some have survived, though not without scars. The people who stayed, who tried to understand even when they couldn’t fully grasp what I was living with—they’ve been the ones who made this journey bearable. They didn’t need to have all the answers. They just needed to be willing to walk beside me, even when the path was unclear.
Those relationships taught me that understanding isn’t always about having the same experience. Sometimes it’s just about being willing to listen, to believe, to stay present even when the truth is difficult to face. And sometimes, it’s about accepting that some things can’t be fully explained—they can only be lived.
Living with chronic pain has taught me that relationships are fragile, that trust can be broken by a single moment of disbelief, and that the people who stay are the ones who choose to see beyond the surface. They’re the ones who understand that the silence isn’t always absence—sometimes it’s the only way to survive.