Sufferers of invisible illness urge others to try to understand

On March 4, 1988, Tim collapsed at work.

That day marked the beginning of a 17-year ordeal for him, his wife of 13 years, and their five young children. He had become easily fatigued in the months leading up to the collapse. Now he was in bed 24 hours a day, physically aching, unable to do anything for himself. Life was going on around him, and his children were growing up without his involvement.

Brittany was 24 when she became sick, enduring pain, fatigue, and brain fog so severe that the past several years are unclear.

Amy has battled the fallout of a case of the Epstein-Barr virus for most of her adult life.

These Samaritan Ministries members suffer from invisible illnesses that have sapped their strength and challenged their faith over the years. They hope to help others better understand chronic illness and to encourage and comfort brothers and sisters enduring similar challenges.

Tim: Finding the good

Tim’s condition baffled doctors at first. For 10 months, specialists ran tests on every system in his body, finding each a “little off.” Testing ruled out several major diseases, but nothing pointed to a root cause. The Centers for Disease Control had only first identified and named chronic fatigue syndrome the same month that Tim had collapsed. As a result, his diagnosis came through a long process of eliminating every other likely cause.

His illness now had a name, but he still struggled to see its purpose.

“It is very hard when you feel like you’re dying to see the good in it,” Tim says. “It’s not until later, when looking back, that you can see the good that God has had in it.”

Tim got so low at one point that he did not have strength or faith to pray anymore and asked others to do it for him.

“It felt like God did not care,” Tim says. “My prayers and others’ prayers were not being answered, at least in what I desired—relief.”

Adding spiritual pain to his physical pain, the pastors and elders at Tim’s church told him that the illness must have been due to unconfessed sin in his life. When no sin could be identified, the church leaders stopped visiting him.

“They believed that this illness was all in my head,” Tim says. “It hurt that they believed I was not really sick. But we remembered that Jesus forgave those who wrongly accused Him, and He helped us forgive them.”

Tim’s condition gradually improved. After a couple years, when he could be up for five minutes at a time, he would sit at the piano, teach himself to play, and worship the Lord. Because Tim was at home for so many years, God gave him a special place in the lives of his children. He worked with his wife to homeschool and disciple them. Today all five children walk with and love the Lord.

And years later, when Tim had recovered, the elders came to him and apologized for all they had said and done.

“When people don’t believe you, and you’re not getting well, it is not easy to keep hoping, but it’s important that you do,” Tim says. “Don’t lose hope. It’s not easy to always be ill, but our hope is in the Lord, not our physical condition. And, like Job said, ‘Though He slay me, I will hope in Him’ (Job 13:15).”

Brittany: Living in a fog

At 24 years old, Brittany was a healthy, active woman. But in 2012, while weeding the yard, Brittany inhaled poison-ivy spores. Spots started showing up all over her body, leading to the need for prednisone shots. Eventually, her adrenal glands stopped working, and she was put on synthetic cortisol for two years.

The following year, Brittany still was not doing well and tested positive for Lyme disease.

For several years, Brittany battled brain fog so severe she sometimes had trouble speaking and finding words. She suffered all-over body and joint pain as well as severe fatigue. Antibiotics and other treatments left her bedridden.

Protocols such as various intravenous treatments that worked for others did not work for Brittany. Plans to travel to Germany for treatments were canceled when she was diagnosed with autoimmune encephalitis caused by mold toxicity, a condition she developed after her family moved to a new home in 2017.

After that house tested positive for mold, Brittany and her family moved into a hotel. A family at their church graciously allowed them to move into an apartment at their home, but that location also had mold. They had to move yet again and get rid of nearly all their possessions due to mold contamination.

Brittany lost a year of treatment and had to essentially restart her treatment for mold toxicity.

Today, Brittany is 34, but her memory is so fuzzy that she has trouble remembering much of the past eight or nine years. Her family has been a rock for her, she said, as it’s been difficult to keep up many friendships or relationships. Until recently, she was often too ill to even attend church in person. And her dreams of becoming a young wife and mother, as well as enjoying her 20s and single life, have slipped away.

A recent surgery that helped lessen the pressure in her brain and reduce overall inflammation has helped Brittany, who is doing better now than she has in several years. But she still has a long way to go.

“It’s hard for people who have not walked through chronic illness to understand,” Brittany says. “It’s not like cancer, where your hair falls out and everybody can see. Many aspects of the illness can be invisible, and that is incredibly isolating.”

She wants to help others understand more about chronic illness.

“With invisible illness, you look fine on the outside, but on the inside, you’re not well,” Brittany says. “There are aspects of invisible illness that can seem odd.

“The Church has come a long way, but there is still a need for believers to open up their minds a little bit more.”

To those blessed with good health, she says, “Be thankful that you have not had to experience any of it. Take the blessings that God has given you and pay it forward. Invest in kids with disabilities or someone in the church who is not as active because of invisible illness. Do not take for granted what God has given you, because there are a lot of people out there who suffer daily in silence.”

A passage that Brittany has clung to in her journey is 2 Corinthians 12:8-10.

Three times I pleaded with the Lord about this, that it should leave me. But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

“I know God is using and will use these trials,” Brittany says. “For now, I press on and continue to hope and pray for healing, and ultimately that my life will glorify God.”

Amy: Never 100 percent

During her college years, Amy came down with a severe case of mononucleosis, an illness that can be caused by Epstein-Barr virus (EBV).

Most people who get mono recover and never have another problem with the virus. However, 30 years later, Amy is still fighting the illness. EBV goes through active and inactive phases, sometimes causing Amy to feel like she has mono again for several months at a time. Her body is unable to keep the virus in the “inactive phase” because of an underlying immune deficiency. Amy is married and has raised two daughters, but she has never felt 100 percent.

“Chronic illness is full of lots of loneliness, isolation, and heartache,” Amy states. “There is also a lot of pretending—making myself come off as a normal, healthy person to be accepted despite not feeling well.”

However, Amy has been able to reflect on the good things and the hope that God has given her throughout her journey.

“I have spent a lot of time reading and searching Scripture to learn about suffering, and God has been teaching me a lot about Himself and about myself,” Amy says. “I rejoice in the times I feel good, and work through the times when I don’t. God has given me a lot of compassion for those who suffer because of having gone through it myself.”

When healthy people interact with someone with chronic illness, Amy recommends asking open-ended questions, and really listening to the answers. She suggests such phrases as “That sounds challenging” or “Can you tell me more about that?” or “How can I pray for you this week?”

Amy says Mark 14:3-9 has encouraged her over the years, specifically verse 8, in which Jesus defends the woman who anointed Him with the alabaster flask of expensive ointment and says, “She has done what she could.”

Andie Dill is a Communications Specialist at Samaritan Ministries.

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