Borrowing and Holding Onto Hope:
A Journey Through Long COVID and ME/CFS

Living with Long COVID and ME/CFS means facing uncertainty, loss, and often, unimaginable suffering. But it also means discovering resilience in ways few can understand. One patient’s story highlights the immense challenges of these conditions—and the hope that can emerge even in the darkest times.  

From Fear to Acceptance 

There was a time when I believed my journey was coming to an end. My body was failing, and I was preparing for the inevitable. I had spoken with my loved ones about my final wishes, had difficult conversations with my doctor, and faced the reality that my spine was so unstable (from *CCI/AAI) I should have been paralyzed. The weight of it all felt impossible to carry. 

Then, a conversation changed everything. A friend and I spoke openly about the worst-case scenario of ME/CFS, and I realized something profound: I was already living it. And yet, I was still here. That realization, along with my faith, allowed me to shift from resisting my reality to surrendering to it—not in defeat, but in acceptance. 

That acceptance led to action. I chose to pursue two surgeries that could help stabilize my condition. With that decision, something shifted. Hope took the place of fear, and I began to see a path forward. 

A New Understanding of Healing 

Before my illness, I believed that a healthy lifestyle could shield people from chronic disease. I thought medicine was straightforward—if you got sick, doctors would fix it. 

Long COVID and ME/CFS turned that belief upside down. 

I’ve learned that healing isn’t just about treatments or cures—it’s about how we care for ourselves, day after day. It’s about patience, grace, and adapting to a life filled with unexpected challenges. Some days are harder than others, but I’ve realized that even the smallest steps forward matter. Healing isn’t about going back to who I was before; it’s about finding a way to live fully in the body I have today. 

The Role of Bateman Horne Center 

Through every difficult moment, my provider at Bateman Horne Center never wavered. She promised to stay by my side, and she did. When options seemed limited, she went above and beyond to find specialists who truly cared. Even when solutions were difficult, I always knew she had my best interests at heart. 

BHC’s support groups provided more than just resources—they gave me a sense of community. I met people who had been navigating this illness for years, people with unwavering determination and strength. Their wisdom helped me find my own path. And the staff at BHC? They treated me with patience and kindness, even when I struggled to get words out during a call. They never made me feel like a burden. They made me feel seen. 

The Power of Borrowed Hope 

When my pain became unbearable, my therapist told me something I’ve carried with me ever since: “If you don’t have hope, borrow it from others.” 

That’s exactly what I did. 

Friends, family, and even strangers stepped up to help me get the care I needed. Each act of kindness, no matter how small, became a reminder that I wasn’t alone. Their belief in my future helped me believe in it too. 

What People Need to Know 

Living with severe Long COVID and ME/CFS is more than just being sick—it’s an experience of profound loss. It can feel like being trapped, isolated from the life you once knew. It’s humbling to rely on caregivers. It’s heartbreaking to watch your dreams slip further away. And it affects not just the person with the illness, but their entire family. 

The world needs to understand this suffering. But just as importantly, the world needs to see our strength. 

Even in the hardest moments, hope exists. And for those who can’t find it on their own, there are always people willing to share theirs. 

Join Us in Raising Awareness 

This Long COVID Awareness Day, we ask you to listen to these stories. To share them. To advocate for those who are still fighting. 

If you or someone you love is living with Long COVID or ME/CFS, know that you are not alone. Bateman Horne Center is here to support you, to believe you, and to walk this path with you. 

Editor’s Note: 

*Cranial Cervical Instability (CCI) and Atlantoaxial Instability (AAI) are conditions where weakened ligaments in the upper spine cause excessive movement.