Finding strength in suffering from Lyme disease

One Woman’s Struggle with Lyme Disease Leads Her to Greater Trust in the Lord

By Zachary Hoffman

“The only true freedom and peace I’ve ever experienced is in resting in God’s sovereignty and knowing that He is in control over everything.

Every tick bite, every illness, every storm.

There is nothing that happens without His authority; and while I wouldn’t have chosen illness, I know that if I’m never healed God is using it for good,” said Sharon Stacy.

Searching for Answers

In October 2016, Sharon and her family all came down with a routine winter sickness, the kind nearly every family with small children has experienced. Her husband and children quickly recovered, but Sharon just kept getting worse.

Sharon said, “In addition to losing 25 pounds in the span of two months I also lost my ability to read and drive. I experienced tremors, extreme nausea and fatigue. I became extremely sensory sensitive to smells, sounds and lights. I would forget where I was and forget words and names. I couldn’t handle temperature changes. I became intolerant to foods I had eaten my whole life. My bones felt like they were burning and I had the sensation that my whole body was constantly vibrating. I had trouble sleeping and would often wake up soaking in sweat and gasping for air. I couldn’t move my head without becoming really disoriented so I moved my body when I had to look at something or talk to someone. I had nerve pain in my face that hurt all the time. It was behind my eyes, on my forehead, down my nose and into my teeth.”

Sharon went to an Ear Nose and Throat doctor (ENT), convinced it was an awful sinus infection. Unable to find anything, the ENT referred her to a neurologist, who ordered an MRI, which again showed nothing wrong.

Test after test gave no answers or new insights. The only thing that showed up in testing was a low white blood cell count and a stomach virus that is usually only seen in nursing home patients.

“Why couldn’t they find anything? I felt like I was the lead character in a thriller,” said Sharon. “Something was attacking my body, my nervous system, I could feel it, and no one believed me. In fact, they looked at me with pity, like I was crazy. Was I crazy? I was starting to doubt myself.”

During an eye appointment with Dr. Sutton, in Boone; he checked her eyes and after hearing about her symptoms told her that she had something multi-systemic going on and needed to keep looking until she got answers.

She also had a friend at the time, Elizabeth Weigl, who had been through her own health issues and told her the same thing. “If a doctor won’t listen, thank them and find another doctor.” It was encouragement she had desperately needed.

Finally, in April 2017, seven months after first getting sick, and even after two previous tests had come back negative, specialized testing confirmed that Sharon was suffering from Lyme disease and a host of other co-infections.

“Something was attacking my body, my nervous system, I could feel it, and no one believed me. ”

A New Normal

Lyme disease is a multi-systemic, tick-borne illness with a multitude of symptoms from mild to severe. Those who have lyme disease may suffer anything from joint pain, fever and nausea to light sensitivity, confusion, even hallucinations in some cases, and so much more. And Sharon has experienced just about every symptom along the spectrum.

“I don’t remember a tick bite, or a rash. Most of my friends with Lyme don’t either.” Sharon said, “I don’t look sick so it’s hard for people to understand just by looking at me how debilitating this disease really is on a day to day basis.”

On a good day, when her vision isn’t blurry and when her nervous system isn’t acting up, she can be active and it doesn’t give her a fever.

On bad days Sharon feels like she has the flu. She can’t swallow, read or drive. She’s really dizzy and has a lot of head pressure. If she can, she just lays down and rests because she just can’t push through it.

“I’ve had to grieve the loss of who I had been before this illness,” said Sharon. “I couldn’t be the same mom, wife, friend etc. My life changed profoundly and I gave myself and still give myself permission to grieve that.”

Still searching: Sharon receives IV treatment while her young sons keep her company. Sharon has tried countless different treatments for her Lyme Disease, ranging from traditional to holistic and experimental.

God’s Gifts

For Sharon, perhaps the biggest obstacle she has faced on this journey has been feeling scared, alone and misunderstood.

“When I first got sick I felt very hurt by the church. Being homebound for months I couldn’t understand how I could so easily be forgotten or dismissed.”

Three years ago, Sharon began meeting with a Christian counselor to help her overcome these feelings. Now, when she begins to feel them, she replaces these feelings with God’s truth.

“I am never alone and I am known,” she says.

Sharon has started to see the beauty of God’s hand in what she once only saw as hurt and pain. She has started to see how joy and sorrow can be felt simultaneously.

“I was never guaranteed healing in this life, or comfort, or health,” said Sharon. “But knowing that God was aware of what I was going through and He chose to show me how much He loves me, in tangible ways, was such an achingly beautiful gift.”

When she was living very dark days, she cried out on her knees—desperate, hurting, raw, honest. God opened her eyes to the little miracles He was already working around her and through her.

Into these dark nights of the soul God brought encouragement by way of unexpected friendships.

“I have felt God’s love so much through fellow believers who were willing to sit quietly with me in the dark.” Sharon said, “As Christians we should be willing to get uncomfortable in order to meet people where they are.”

Sharon would come to learn that most of these people had been through deserts themselves. Deserts God had given them and now through them God was giving her good gifts, in order to be able to empathize better with others and to open their eyes to the needs right in front of them.

For a long time she thought it was her job to help others understand what she was going through, but then she realized that God had been putting people in her life who did understand without having to explain. It was a beautiful gift. She started to see how personal God was in showing His love and grace to her.

“He won’t leave you where you are,” Sharon said. “Be open and honest to yourself and God about how you feel. Don’t be afraid to share with those you trust.”

Family time: Sharon and her family enjoy a beautiful day on the Blue Ridge Parkway. Lyme Disease can cause severe, life-disrupting symptoms. On good days, she’s able to be active and spend time with her family, but on bad days, she can barely move.

Two Steps Forward, Ten Steps Back

For Sharon, her new normal has been—try a treatment, get better, get worse, try a new treatment. She has tried conventional medicine and treatments as well as experimental and holistic treatments.

“In the chronic illness community there is a saying that ‘healing isn’t linear’ and it’s true. You take two steps forward and ten steps back a lot of times,” said Sharon.

She has inhaled iodine mixtures, had ozone IV’s, UV light therapy, massage therapy, acupuncture, chiropractic medicine and functional neurology. Currently she is looking into a new treatment that has shown a lot of promise in the Lyme community.

In the beginning when a treatment would start making her feel better, Sharon would get super excited and hopeful. Then she would be devastated when the symptoms came back. But now she has learned not to hope in treatments.

Sharon said, “I’ve learned to embrace holding onto hope for healing with my palms open and outstretched. I know that God can heal me even if the treatment doesn’t work or if I don’t know what to do next.”

Overcoming Comparison

There have also been two recurring themes God has seemed to be using to teach Sharon over the last several years. The first is in comparing herself to others, to not fix her eyes on them.

Sharon said, “When I was struggling with infertility years ago I got caught up in ‘why or why not me?’ It was so easy to look at others and not understand how God could bless them when my arms were empty.”

Now, with health issues, Sharon has to be careful not to compare herself to her former healthy life or the healthy moms around her. She cannot look to the things around her for comfort and security in this life but only to God.

Unwavering faith: Sharon gives a thumbs up as she’s forced to rest on the couch. Despite her exhausting struggle with Lyme Disease, Sharon continually finds faith, comfort, and security in God.

Sharon has been encouraged through Jesus’ teachings in John 21:22; “If it is My will that he remain until I come, what is that to you? You follow Me!”

She also has seen God’s instructions reflected in a quote from C.S. Lewis in the book The Horse And His Boy, “’Child,’ said the Lion. ‘I am telling you your story, not hers. No one is told any story but their own.’”

“I don’t need to worry,” Sharon said. “My job is to follow Him.”

Surrendering Control

Another recurring theme in Sharon’s life is the need for true spiritual rest and not trying to be the one in control.

“Where do I end and let Him begin?” Sharon asks. “I do have responsibility but it is not my job to figure it all out or to try to control outcomes. I don’t need to look behind the curtain to prepare myself for what is to come because I’m only promised strength for today.”

That line, “strength for today”, from the hymn Great Is Thy Faithfulness is a line that she has truly come to love.

Sharon said, “When I truly rest in Christ and let him guide my path there is always strength for today and hope for tomorrow.”

*If you are suffering from a chronic illness and in need of support, you can visit the support group, More Than, at Alliance Bible Fellowship.

For more information or to be put on a mailing list please contact: Cottrellag@gmail.com

This article was originally written for the Summer 2020 Edition of The Journey magazine.

Strength for Today