Speaking Up about Lyme Disease

Sam Sofio speaks hope in the midst of chronic illness 

By Julia Swain

Following his graduation from high school, Sam Sofio, a junior Professional Writing and Information Design major, had his path seemingly laid out for him: attend Boyce College, grow in his faith and enjoy fellowship with other believers. 

“I really wanted to be with brothers and sisters in Christ,” Sofio said. 

However, financial realities closed that door. Instead of enrolling in the Christian education he longed for, Sofio enrolled at a local community college to earn his associate degree in English and save up money. 

Not only was this not the direction he imagined, but it was also the beginning of a much harder journey. 

In the two years following high school, while he earned his associate degree, Sofio picked up a new hobby with his dad to pass the time: disc golf. He was self-admittedly “not the best” and often found himself knee-deep in brush, searching for discs that seemed to camouflage themselves perfectly in the forest floor. At the time, he didn’t think much of it. 

“I didn’t even know what a tick was,” Sofio said. “I didn’t know what Lyme disease was.” 

When an opportunity arose for Sofio to finally attend a Christian university, his family was thrilled. 

“My parents knew this was a dream come true for me, and what seemed to be the beginning of my future,” Sofio said. 

But not long after, his health declined. A once normal, healthy college-aged student became someone who struggled to complete even the simplest daily tasks.

“My parents, who once watched me sprint across soccer fields, now watched me struggle to go on walks, to take deep breaths and to function without pain and fatigue,” Sofio said.

What followed was a seemingly endless cycle of doctors’ appointments, blood tests, heart monitors and imaging — each visit carrying less hope for answers than the last. 

“The medical system tossed us back and forth,” Sofio said. “We were left broken, misdiagnosed, with little in our wallets and no answers.”

As the months stretched into four years, the physical pain was matched by emotional and spiritual exhaustion. Nights became especially frightening. 

“I remember being scared to go to sleep because I thought I was dying,” Sofio said.

Sofio also described a relentless cycle. 

“During the day, you wish it was nighttime so you could sleep,” Sofio said. “But at nighttime, you think you’re going to die and you wish it was morning.” 

One of his lowest moments came on the basement floor of his parents’ home. 

“I was staring at the ceiling, just crying out, ‘Why, God? Please heal me,’” Sofio said.

On another occasion, struggling for air, he stumbled outside and collapsed. His father rushed to his side. Sofio’s father felt broken watching his son struggle at their house for nearly 1,400 days with his health. 

“He recalls those four years with tears, saying that he was thinking, ‘What happened to my son?’” Sofio said. 

Despite the fear and confusion, one foundation anchored him. 

“If it wasn’t for my relationship with Christ, I would have lost hope,” Sofio said. 

After first falling ill in 2019, it took two years of day-to-day struggles out of those four years to receive a diagnosis from a Lyme-literate doctor.

“That was a blessing from God,” Sofio said. “It was a huge answer to prayer.” 

While treatment began to help, his journey to recovery mirrored a long and slow uphill climb. 

“I never reached a place where I said, ‘OK, I’m healed. I’m ready,’” Sofio said. “I just improved enough to move forward.” 

During that uncertain period, he prayed a simple yet bold prayer. 

“Lord, I’ve been trusting in you with all my heart, and you promised to make straight my paths, so would you please do that?” Sofio said. 

Not long after, his mom asked that he attend a worship night with her at Cedarville University, a Christian school in Ohio that he had never heard of. 

“It was everything I dreamed of,” Sofio said. 

Sofio continues, “I left feeling a tinge of sadness because, since high school, I had always dreamed of attending a Christian university. But now it had been six years, and I knew I couldn’t afford it. All I could do was ask God once more, ‘Why?’” 

Still, encouraged by his family, he applied anyway, and the Lord worked out the logistics needed to attend. 

“It really showed His love and kindness and faithfulness to me as a Father,” Sofio said. 

Then, in his junior year, sitting in the dining hall, he received a phone call that would change everything — taking his story far beyond campus. He was invited to participate in a Lyme disease roundtable at the U.S. Department of Health and Human Services in Washington, D.C. 

“I was in shock,” Sofio said. “I was stunned by God’s sovereignty, loving kindness and faithfulness.” 

Sofio used this moment to recall how far he had come. 

“I grew up in a very small town,” Sofio said. “I thought my future was over. I had Lyme disease. I had little money. I didn’t know what I was going to do.”

Yet the Lord used his story in a mighty way, and now he was preparing to speak before national leaders and medical advocates. 

“God not only brought me to Cedarville, but He allowed me to advocate on behalf of Lyme sufferers and testify before governmental leaders about His faithfulness,” Sofio said. 

On the morning of the panel, he felt a lot of peace, but as the panel was about to begin, nerves threatened to overwhelm him. A focus on Scripture settled him. 

He remembered Isaiah 41:10, “Do not be afraid, for I am with you,” and personalized it. “Sam, do not be afraid. I’m with you.” 

“When I focused on Christ, my fear gave way to peace as I trusted in the one who walked with me those 1,400 days,” Sofio said. 

At the roundtable, Sofio had a goal of advocating for those who felt unheard. He spoke on the need for better research, more accurate and affordable diagnostic tools and insurance coverage for treatment.

“You can spend 10 years and $10,000 chasing treatments only to find you’re not better,” Sofio said.

Sofio was encouraged to hear Robert F. Kennedy Jr., the secretary of Health and Human Services, speak up for the many Lyme disease sufferers, announcing that they will fight to develop effective diagnostics and treatments and that the days of them getting gaslighted are over. 

For Lyme sufferers, they battle in a struggle between hope and hopelessness. Because of this, Sofio decided to share his hope in Christ. 

“If it wasn’t for my relationship with Christ, I would have lost hope,” Sofio said. 

Today, Sofio continues treatment while pursuing his degree at Cedarville. Healing has been gradual, and weakness has not disappeared. 

“I came to college still weak and really needing the Lord,” Sofio said. “I think God’s teaching me that it’s OK to be weak. It’s actually a good thing sometimes.”

He can also see the purpose in this lesson. 

“Because when I’m weak, I can depend on Him for strength,” Sofio said. 

From crying out to the Lord in desperation to sharing his story in front of national leaders in Washington D.C., Sofio’s journey is a testimony that weakness does not cancel purpose, and that sometimes the very struggle that feels like the end of your future becomes a launching point for it. 

Julia Swain is a senior Journalism student and the Editor in Chief of Cedars. She enjoys concerts, coffee and watching and analyzing any Cleveland sports team.