Understanding why and how the church can respond to chronic illness in youth

Photo by Kate Williams

It is 3 a.m. and I awaken with a start. My body feels like it just stopped and all my systems are rebooting, including my heart. What is this—sleep apnea, anxiety or something else?

Anxiety is a good bet. You see, my son is very sick. He began slipping away one fall; simple things like colds or stomach flu leveled him for a week or more. By February, he had walking pneumonia. By April, he was left with intense fatigue and an inability to think or process his work for school.

His teachers noticed his difficulty. The special education teacher recommended antidepressants because he was dragging himself around campus with his nose in his chest. His pediatrician thought he needed anti-depressants as well and offered to refer him to a psychiatrist. After my pleading further evaluation, a blood test indicated mononucleosis.

However, I strongly suspected this was not a straightforward case of mono. On a hunch, I took my son to another doctor, this time a Lyme Literate Doctor (LLD). The wait to see her was six weeks. Finally, in June, she performed a clinical intake and I watched my son fail the evaluations one by one. He had Lyme disease.

Fast-forward 5 years and Louis, my son, is not yet completely well. He did manage to start college this last January. We are thrilled, of course, but it is far from over. Intense insomnia and mental dysfunction still plague him. However, it is just enough better that I am now in a position to reflect on the journey our family has taken through the medical and social dynamics of chronic illness.

The church is uniquely positioned to be of great help to chronically ill youth. However, ministry models are not adapted to reach them, and chronic illness is not well understood. Often youth ministry models do not fit the need of young people who are sick, and healing ministries do not fit the need of sick people who are young. I believe there are simple and effective measures youth ministries can take to embrace students who are chronically ill.

Understanding chronic illness

Generally defined as health problems requiring ongoing management over a period greater than 3 months, examples of chronic illnesses are: depression, anxiety, concussion, obesity, cancer, diabetes, chronic pain, and asthma. These maladies vary in their symptomatic type and intensity. However, they share the common denominator of social isolation. Estimates of chronic illness at levels preventing regular school attendance are 10 to 20%.[1] At such rates, it is safe to assume most churches have some of these kids in their congregations.

Missed events and lost friendships

Chronic illness often involves navigating a complicated set of medical protocols and educational difficulties. My son was hooked up 7 hours a day to an antibiotic drip through PICC lines requiring homecare nursing visits. As a result of his illness, he took five years to graduate high school. Perhaps the most painful part of all those years was the many missed events and lost friendships. The isolation suffered by the chronically ill is intense.

Biographical disruption

When facing an extended illness, disruption affects the timing of nearly everything. The time needed to read a book, write a paper, or graduate from high school becomes hard to predict. All adolescents are priming for a launch into adulthood; for chronically ill youth, gnawing, unanswerable questions regarding purpose and trajectory through the “normal” course of teen life are a significant source of pain. This becomes a keen point of difference between the sick and the well, and it sets the stage for (often self-imposed) isolation.

A difficult diagnosis impacts social support

Some chronic illnesses, like Lyme disease, are not well defined by the medical community. Schools, doctors, and psychiatrists may say the patient is making up their symptoms or even that parents are fabricating illness. An unclear diagnosis puts a potential support network into a whirlwind of misattribution. The extended family and friends, or even one of the child’s parents, may not trust the parent functioning as medical advocate. This is the point when aunts and uncles judge from afar, friends are lost, and marriages are broken. Whatever the reason, most people put distance between themselves and an unclear medical situation. The result is, as Phyllis Bedford, Executive Director of LymeLight Foundation, says, “Many patients wish they had cancer instead of Lyme disease because people understand cancer.” But cancer kills, so why would someone want cancer? The answer is that social isolation is so bad in a misunderstood malady that a chronically ill person will trade understanding and social connection for a higher risk of mortality. In concurrence with this sentiment, researchers discovered that “cancer increases peer acceptability” among adolescents.[2] We, the chronically ill, are sick, we are misunderstood, we are the unclean, and we are, for all intents and purposes, the lepers of our day.

What can the church do?

The trick is to realize many of your chronically ill have slipped quietly into their bedrooms. Not many families will go to a lively youth ministry for help with a bedridden child. We need to rethink the reach of our ministry models.

Support groups for parents

Ministering to sick kids means ministering to the parents. Forming a support group at your church for parents during all phases of chronic illness (diagnosis, treatment, and coping) is one approach accomplishing two great things: reducing social isolation and increasing spiritual support. These are both key factors in lowering stress for parents. Studies show this element alone has a huge impact on how well a child copes with their illness.[3]

Pray for the sick

I’ve spoken with many pastors specializing in youth, healing, recovery, and even evangelism. Brett Koerten, a youth pastor at Menlo Church in Menlo Park, CA, says, “If anyone should be good at this ministry (reaching chronically ill youth), it should be the church.” The church has always had a mandate to anoint the sick. “Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well: the Lord will raise him up.” (James 5:13-15, NIV) This verse tells us what to do as a church: go, anoint and pray with expectation of healing.

For the modern church, that last bit can be an obstacle. An extended illness tests faith; people are afraid of what God may not do. However, prayer always works for a chronically ill person. In Acts 3:4, Luke tells the story of how Peter and John heal a man who couldn't walk, who was sitting at Jerusalem’s Beautiful Gate. Considered an “outstanding” miracle by the ancients, it is easy to miss its preamble: “Peter looked straight at him, as did John. Then Peter said, ‘Look at us!’ So the man gave them his attention…” (Acts 3:4, NIV) Before they performed the miracle, Peter and John recognized the man’s personhood. They vanquished his isolation so that he could receive God’s gift of healing.

Be the answer to loneliness

Research shows that loneliness increases health risks for chronic conditions. In fact, it initiates a negative feedback loop of lower self-esteem and reduced optimism (Christians call it hope), which further act to diminish social connection.[4] If already sick, isolation makes a person sicker.

When James tells the sick to call on the elders for anointing and when Peter and John look into the eyes of a disabled man, they are preparing the patient for healing. The modern church can do this too. When we pray, visit, or even offer a healing service, isolation is reduced. Subsequently, cortisol levels inducing an inflammatory state are also reduced. Now, the body can recover. When less depressed due to isolation, a patient is more able to respond to treatment.

Listen with empathy

Feeling different from others due to illness is an overwhelming factor for sick teenagers. A collective teaching or even a panel of youth regarding common chronic conditions, including anxiety and depression, are ways a youth group can create empathy and a sense of shared experience. A suffering teen’s participation in a group is more easily accomplished by building a bridge based on empathy.

Be persistent

When a student is sick and lonely, even remote interaction via social media or texting may be welcome. After empathy, persistence is an important quality in any ministry. If a teen doesn’t get back to you, it doesn’t mean they didn’t benefit from your attempt. This principal applies to our mainstream youth as well. Research on loneliness suggests that 80% of those under 18 experience loneliness. Studies also show youth open text messages at a rate of 100%. Because of this, more and more adolescent psychological services are interacting via text. Messages of goodwill, helpful Scripture, or even something funny are useful ways to keep a kid in the church’s social circle. There is one caveat: Kids who are at home and missing out on events feel more depressed when they see all the great things people are doing without them. Sensitivity to this is important.

Expand the scope of small groups

Small groups can present opportunity for connection with members not able to participate regularly or at all. In addition to offering regular prayer, the leader and other teens can figure out a way to keep an ongoing connection. If the youth is able to make it to group, the leader can help all the students bridge an initial moment of discomfort.

Visit the sick

As a consistent relationship is created, it is possible to consider side-by-side activities, such as a movie or, if energy allows, a game night. Speak with the parent about what is appropriate for the youth’s condition. Invite a mature student with reserves of empathy, and apply the same rigor of standards (gender, adult ratio, etc.) you would to any other ministry situation. Chronically ill students are vulnerable in many ways, so a wise person in the room is helpful and the visit should be leader moderated. Be patiently persistent. It is very likely a sick teen will need to cancel, maybe even last minute. Keep up the communication; they appreciate it.

While all of these suggestions are things I wish I had known to tell my son’s youth leader, I do not think these requests would have been realistic at the time. Without a youth ministry mindset including empathetic and persistent outreach, it feels like asking for special treatment or at times, like an imposition. However, if we can shift our youth ministry model just a bit, not only is it inclusive and helpful, it also offers an opportunity to disciple youth in an important aspect of Christianity—care for sick.

The sick were with Jesus and his disciples in his day and they are with us today. The New Testament’s stories of compassion, of healing, and of God’s action are shown to us in the lives of those who suffer. As a church we must respond. As a loving community we must be brave and, like Peter and John at the Beautiful gate, break the isolation of our chronically ill youth by looking at them.