Relentlessly showing up for those with severe illness
Written by J.M. Bergman
Elizabeth Duarte was diagnosed with late stage Lyme Disease and four other major vector borne diseases in her early twenties. She had been bit by a common tic in Manitoba when she was seven, and this is when her symptoms began.
By the time she actually received a diagnosis she had lost the ability to walk, eat, and sleep. Her body could no longer absorb water and her brain had gone into a permanent state of oxygen deprivation.
“I deal with constant brain-fog,” she says. “It feels like the world is moving around me, and I can see it, but it’s like there is a pane of glass between me and the ones I love. I can never really reach them.”
Short outings or car rides are exhausting, and in most conversations she only absorbs about a third of what is said.
Prior to the onset of these life-threatening symptoms, Duarte was involved in various ministries around the world. She spent summers at camp, went on missions trips whenever she could, shared the gospel in homeless shelters, and used performance and teaching drama to build relationships with young people in Europe and across North America.
“It’s amazing the places you can go, where doors are completely closed to the gospel, but where the arts can be used as a venue to share the love of Christ nonetheless,” she says.
Since her illness, Duarte has had to learn a whole new way of giving and receiving love, both with those around her, and also in her relationship with God.
She fights through painful treatments in hopes that those she loves will not have to grieve her death. For their sakes, she tries to keep humour alive in conversations, and tries to encourage others in small ways when she has energy to connect virtually. She enjoys meeting online and sharing company with others over a meal or video game, or studying the Bible together.
Sadly, many of her relationships have been lost or broken due to misunderstandings. Her silence and distance have nothing to do with her feelings toward her friends; rather, she must often save the precious amounts of energy she has each day to simply survive.
Over time, Duarte’s understanding of suffering and how God sees her have shifted. “I felt like God wasn’t who I thought He was … that maybe He wasn’t all-powerful, or maybe He just didn’t love me, because I had always had the impression that if God was pleased with me things would go well. I didn’t see value in the valley, only in the story of an amazing comeback.”
These beliefs were held by those closest to her and in her church. Some became offended when their prayers did not lead to Duarte becoming healed. There were church members who told her and her family that they couldn’t keep attending the same church as her because “they had to believe in a God that must heal, and that their faith would be destroyed if they stayed and had to look at me.”
Duarte suggests that this worldview has developed in the comfort and the opulence of the North American Church. “We have had so much for so long, and suffering has become so far removed from our First World experience that perhaps a root of pride came creeping in. We have good things, and others in this world don’t, surely it’s because we deserve it.”
This idea that material or physical wellbeing is a sign of faithfulness can crop up subtly, despite a common rejection of the prosperity gospel. Many Christians in North America “cherry-pick verses, choosing the ones promising blessings and health and material wealth and ignoring the verses promising us hardship, and the verses that give context to the promise of these blessings,” says Duarte.
But does God really promise that suffering in this life is below us?
If we compile primarily verses about blessing, we divorce them from their context and from the whole picture of Scripture. Passages like John 16:33 and 2 Corinthians 12: 7-10 describe suffering in this world as an assumed reality. The book of Job is dedicated to the topic of suffering.
This separation of good promises from the fuller context creates faulty expectations, sometimes leading people to feel unloved or betrayed by God, or feel He must not be all-powerful afterall.
“This is a tragedy. It’s a faith that doesn’t line up with reality and goes against Christ’s purpose in coming by alienating the very demographic Christ desires to reach. He came for the broken, the weary, and the hurting,” Duarte says. “God moves—not just in spite of the difficulties—but through them.”
There are no easy answers or quick fixes for chronic pain, and those who are brave enough to face this reality and walk through it with Duarte are those through whom God’s love shines brightest. She feels loved when her friends and family believe her descriptions of the excruciating pain and choose to stay and shed tears with her.
For those with serious illness, often “all we want is to find a way to stop you from walking away from us,” Duarte says. “Give us permission to be honest in our pain, to look horrible and to know that we don’t have to cover it up all the time.”
It can be difficult for those with friends or family struggling with illness to know how to show love, not cause harm—like over-eagerly trying to fix things or by backing away in frustration, as Duarte experienced in some churches. Yet our responses to friends and family in these situations can be remarkably simple and intuitive. “Show them love by believing them and don’t feel like you have to fix it,” says Duarte.
One of the best ways to love those with illness isn’t grand or impressive. It is offering our presence. It is showing up again and again, over the phone, online, or in person. In action or in silence. For 15 minutes or for several hours.
“Your phone call might be the thing that that person uses to motivate themselves to get past the next painful treatment, or another sleepless and endless night. Your love, your steadfastness, will give them hope.”
J.M. Bergman is an internationally-read author and creative content writer who has also worked in editing. She has published two novels and has written for a number of Christian magazines on topics such as trauma, grief, recovery, and wellness. Her upcoming release, a poetry collection dialoguing her journey from chronic pain to identity, will be available soon. J.M. lives in Manitoba with her husband and their exceptionally cute black lab.