This guest post by Jennifer Ji-Hye Ko explores how the local church can welcome, include, and minister to chronic sufferers. It is part of my “Welcoming…” series, which features first-person articles on how to welcome various demographics into our lives and church communities. Previous installations include “Welcoming the Hearing Loss Community,” “Welcoming the Eating Disorder Community,” and “Welcoming Single Parents.”
You’re feeling it, aren’t you? That desperate excitement. The quarantine restrictions may soon be lifted, putting an end to staying at home – an end to virtual meetings and church services, distance learning, and homeschooling. I am truly excited for you, but not necessarily with you. You see, as the majority of people will be rejoicing in their freedom, many like me will experience a loss.
While I am a wife and mother as well as a servant minister in my church, I have also been disabled for 15 years from chronic illnesses. Every day I have woken up with some measure of all-over, system-wide pain. If I can get out of bed, it takes about an hour to warm up my body before it is safe to do so. By my mid-twenties I was inexplicably disabled for three years before receiving my first diagnosis of Complex Post-Traumatic Stress Disorder with Psychosomatization as a result of childhood traumas I had endured.
My second diagnosis was Fibromyalgia/Chronic Fatigue Syndrome which would further explain fatigue and widespread pain, as well as a myriad of other strange symptoms. Involuntary muscle tension chronically pulls my muscles so tight that I can sprain or tear a muscle simply by moving. The fatigue makes it difficult even to breathe some days. Sitting up can take maximum effort leaving me in shivering convulsions.
Last year overt symptoms of Mast Cell Activation Syndrome (MCAS) left my skin feeling like I had a second-degree burn from head to toe. This makes wearing clothes problematic which in turn makes going into public problematic. Between the unique pain and crippling fatigue, it became distressing, unwise, and at times dangerous for me to leave the house.
This past January, while in treatment for MCAS, I was found to have Lyme disease. Lyme has been attacking my nervous system causing problems such as intense sensory sensitivity similar to chronic migraines. Most recently, symptoms of psychosis are becoming more pronounced taking portions of my agency. Any stimuli can trigger an outburst. Now realizing that most, if not all, of these conditions have been building since childhood, it is abundantly clear why leaving home has become increasingly painful for me these past 15 years.
For the past few months, the rest of the world has joined with people like me to experience a degree of what it means to be homebound and shut-in. Church service has been made accessible in a new way as many churches are now providing live-stream. Community groups and Bible studies are meeting via Zoom and other chat services. People are suddenly acutely aware of the weakest among us. Since March, those of us who have been on the fringe of society, shut up in our homes long before this pandemic started, have been able to be included in ways we weren’t before – and that may soon come to an end.
Church, as you celebrate that first Sunday together again, don’t forget us. I’m not saying celebrate less or feel guilty – by no means! It is a sweet blessing to gather together in person with other believers. But as you are celebrating, remember us. Bear witness that we are here and that we matter. Here are a few ways to continue welcoming members of the church who are homebound in the days and weeks to come.
In the first week of quarantine here in Los Angeles, a dear friend of mine texted me exactly what I was feeling: “It only took a pandemic, but we finally got live-streamed services.” We had been discussing ways to make Sunday service accessible for a little while but, for various reasons, it was slow going. It is a big undertaking to provide accessibility. The amount of work it requires can be overwhelming and can cause many people to burn out and/or give up. But for many of us who can’t make it to church on a Sunday morning in normal times, we can feel left out or cut off because of how difficult it can be to love us sometimes. The reality is that it took the majority needing live-stream service for chronic sufferers to be included, and it’s easy for that thought to bring up feelings of anger and bitterness, whether warranted or not. Ideally, it would be a huge blessing for churches to continue live-streaming after the restrictions are lifted. Where that’s not possible, it would be both loving and appreciated to openly acknowledge the lack and to continue to make church services as accessible as possible.
This pandemic has disrupted everyone’s life. Because of how it has, many people now have a glimpse into the daily frustrations and longings of chronic sufferers and those who are regularly homebound. Set time aside to reflect on your time in quarantine and how your feelings might mirror those who have experienced being shut in before now. Write down how you feel during this time and talk to God about it. Be honest even about your most vulnerable, and your most petty, thoughts, and emotions. Then think how a friend might have felt losing her job when illness took over. Or how protecting one’s health can be a daily concern for some. How hospital visits may be necessary but always run the risk of adding infection. Or how not seeing another human being besides one’s family for months can cause an indescribable ache. Not only will this be a sweet meditation with God, but it’s also a way to gain empathy for shut-ins in our church family long after this pandemic is behind us.
While those of us who are homebound desire community, it is often difficult to reach out and can be tiring to do so. Friends can help take that burden by continuing to make community group meetings available via video chat, even after groups begin meeting in person again. It would be a huge blessing for groups to take the initiative to have a laptop and good WiFi set up for members who will still be unable to be physically present. This is also valuable for one-on-one meetings that can’t happen in person, whether they are social gatherings, Bible studies, or other fellowship opportunities.
For years, I overextended myself beyond my capacity to make sure I was physically attending church events. It never occurred to me that, because I am sick, the church could, and should, be coming to me. Recently I expressed to my husband that it feels as though the church has been coming around us much more. He offered another perspective. For the past 10+ years, I have had one faithful friend who has kept a weekly standing appointment to visit. While I do communicate with others via text and the occasional call, this friend has been my main human contact with the church for some time. When she goes on vacation or has an illness flair herself, I feel the absence. Recently another friend started intentionally reaching out through text, phone calls, and socially distanced in-person visits. My husband conjectured that, as starved as we have been for community, this one extra friend carries a profound weight. But this weight ought not to be carried by one or two members of the church body. Each person has unique abilities, availability, gifting, and personal relationships designed to be a blessing to those suffering. Unfortunately, since chronic sufferers are not visible, it can be all too easy for us to fall through the cracks.
As you have likely experienced in quarantine, staying at home creates a black hole pulling our attention into the vortex of our own navels. Isolation makes it really difficult to remember that other worlds exist outside our own. The days grow longer without activities to break them up, and we can begin to feel as though we are forgotten. This is where “tiny texts” and “gifts of remembrance” come in.
It is noble and godly to pray for one another; however, it is challenging to feel the prayers of others if we don’t hear them ourselves. Honestly, it’s hard to feel much outside the continual current of pain and psychological episodes as well as the hurricane of doctor’s appointments, medical procedures, and self-care routines. But a phone call or text can go a long way. You can text your prayer or text, “I prayed _____ for you today.” It’s also a blessing when people send texts about their day and share their own struggles and celebrations. It brings us out of ourselves and invites us to engage in the lives of others. This is a small, concrete way to encourage the exhausted and strengthen the fainthearted (Isaiah 35:3).
Gifts of remembrance are also wonderful signposts to remind us that we are known and remembered. They are gifts that keep on giving. I have a painting on my wall that is so perfect, so spot-on, that I cried upon receiving it. My eyes are filling with tears just writing about it now. When I look at it from my bed, I am comforted that Camille knows me and remembers me. When my husband pulls out his whiskey sampler, I am encouraged that the Rosses know and remember him. And when my daughter wears her favorite princess dress, I am blessed that Marisol knows and remembers her.
Another way to bear witness is to acknowledge us to others. On that fine Sunday when you meet together once again, verbally acknowledge those of your church family who will not be present to attend services. We feel invisible and to a certain degree, we are invisible. When we are safe at home we are out of sight and very easily out of mind. Additionally, relationships are a give and take. Because we can’t give much and need a lot, we can sometimes feel like leeches, no matter the sacred purity and wisdom the Lord is refining in us. Helping the rest of the congregation remember us is an act of love and advocacy that affirms we are, as Paul says, indispensable to the church (1 Corinthians 12:22), equally part of the body even if we cannot be there in the flesh.
Be Patient With Us All
Remain patient and remember that patience is active. Being patient with the weak means sitting with us when we are in pain, talk to us when our minds are spiraling, grieving with us as we endure daily losses, bringing us a meal or groceries (again), and eating with us – doing so without expectation of an end to your patience or our need for it. In our fast-paced age, our patience grows thin fast and we are less likely to long suffer unless the Lord gives us circumstances that demand it. Put it in your mind that there is no time limit on suffering or grief, and that the Lord will always provide strength to the willing heart. So prepare yourself and stay with us. Not only will you encourage the fainthearted and help the weak, but you will also slowly begin to really know us and see us as our Savior does. Even more, you will be our witness, Christ to us in times when our vision grows weak. Together we will reflect the body as it is meant to be, loving and serving one another, reflecting God’s glory to the world, whether we are sheltering at home or traveling far beyond our own thresholds.
Jennifer Ji-Hye Ko is a writer, poet, and servant minister at Cornerstone Church West Los Angeles. She lives with her husband Joon and their daughter, remaining tenacious amid her various physical and mental illnesses. You can follow Jennifer on Instagram at @jennifer.jihye.ko.