It was a chilly October evening, the first notes of winter evident in the air as I opened the door. My dad walked into our house with my brother Ezra half-awake in his arms. He set Ezra on the couch as the family gathered around the living room.
“Hi, Ezra! We got you some presents! Wanna see them?” Adalia asked.
Ezra nodded his head. With our help, he slowly made his way to our kitchen, surgical tape and a patch over his left eye. He cautiously opened his right eye as he neared our countertop, which was littered with handwritten cards, root beer, vanilla ice cream, candy, and some new toys. A smile made its way across Ezra’s face as we made him a root beer float, opened his Halo figurines, and helped him back to the couch.
“Want to listen to some old Michigan State football games, Ezra?” I asked as I helped him sit down. He nodded his head and motioned for me to join him on the couch. For the next few hours, we alternated between watching football reruns, drinking root beer floats, and playing with his new toys.
Another glaucoma surgery was finally over. Another recovery process to begin, more doctor visits to attend. Did the surgery work? Will this truly help? we wondered.
Over the past almost-decade, our family has walked alongside Ezra through multiple surgeries for congenital glaucoma, in addition to a recent ulcerative colitis diagnosis. As Ezra’s oldest sister, I’ve learned a few things along this journey with him that have helped him navigate and cope with chronic illness. I hope these six lessons will encourage and help you as you support your sibling in their chronic illness journey.
1. Pray without ceasing.
The most important way to help a sibling with chronic illness is to pray for them. Try to make it a habit to check in with your sibling at least once a month (or more frequently) for specific prayer requests and praises. Oftentimes, Ezra has very simple requests, such as, “God, please let the nice nurse who finds my vein on the first try be at the doctor’s office today!” or “God, help me to be calm when the eye doctor puts the stinging drops in my eyes.”
If your sibling doesn’t provide specific requests (or is too young to provide them), pray for wisdom for the doctors, your parents, and other medical professionals involved in your sibling’s care. Thank God for medicine, wise doctors, and the progress your sibling has made. Pray for relief from pain and symptoms that often accompany a chronic illness. Pray for God’s hand of comfort and protection and for relief from severe symptoms, surgeries, or procedures.
2. Share wisely.
Always remember your sibling’s story is their story to share. If they’re too young to express what they would like shared publicly, ask your parents. If they specify how they’d like their story shared, respect their request, both on social media and in conversation. Taking these simple steps shows your care for your sibling and their story.
If people ask questions you’re not sure you should answer, a kind reply (“Thank you for asking! This is my brother/sister’s story, so I’ve been asked to keep those details confidential.”) or redirecting them to your parents (“Would you consider asking my parents this question?”) is always a wise choice.
3. Educate yourself and others.
While childhood chronic illness is (unfortunately) common, you will encounter people who don’t know much about your sibling’s illness. When opportunities arise, you can help educate others about your sibling’s illness and how it impacts their health. A simple explanation—“Congenital glaucoma impacts Ezra’s ability to see, as high eye pressures have caused extensive damage in his eyes and optic nerves”—is a helpful place to begin.
Some may ask more questions, while others will be satisfied with a brief explanation. These opportunities are also a great time to invite people to pray for your sibling. Consider offering one or two specific prayer requests or praises, if you have the opportunity.
If young children ask questions or make rude comments to your sibling, kindly correct them. Ezra’s journey with ulcerative colitis has involved several flare-ups, which cause extreme weight loss and necessitate steroids to help with weight gain. Because of this, he has received unkind comments about his weight and frequent use of the bathroom. Kindly inform the child, “Ezra has ulcerative colitis, and it makes his insides not work very well,” or “Ezra’s medicine makes him very hungry.” Brief explanations like these can educate others and divert attention off your sibling to another subject.
4. Enter your sibling’s pain.
Throughout Scripture, we are commanded to “comfort one another” (2 Corinthians 13:11) in various trials and griefs. Entering into others’ pain can be hard, inconvenient, and uncomfortable. However, you have the unique ability to support your brother or sister in their pain, unlike most other people.
The next time your sibling is having a bad day due to hospitalization, surgery recovery, severe symptoms, or other complications, think about a few ways you can empathize and enter their pain. This might involve watching movies together or sitting by their bedside and reading. Offer to play, pray, or just sit there.
Two of Ezra’s favorite activities are looking at family photo albums and reading Bible stories. Looking at photos reminds Ezra of God’s goodness in his trials, the progress he’s made, and the fun moments he’s enjoyed with his family. Entering the pain of your hurting sibling is a great way to demonstrate your love and care for them.
5. Encourage endlessly.
Chronic illness is a rollercoaster of doctor’s appointments, symptoms, diagnoses, therapies, and medications. Every day has the potential to bring new challenges, which can be a source of discouragement and frustration to your sibling. Consider a few ways you can encourage them!
Ezra still remembers the Star Wars book and plush R2D2 I sent him as a surgery recovery gift. He recalls his sisters making an armrest for his bandaged IV arm after a colonoscopy. And another time, we made him a fort to rest in after surgery. After his biweekly injection, Elisa or Adalia will bring him a Band-Aid, which reminds him they care for him.
Whether it’s giving a gift, bringing a Band-Aid, building a fort, making a fun dessert, or building a Lego set, showing up for your sibling in small ways will strengthen and encourage them in their fight.
6. Rejoice in Resurrection hope.
In 1 Corinthians 15, the apostle Paul explains the beauty and glory of Christ’s resurrection. Because of the Resurrection, sin and all its consequences (like chronic illness) no longer have eternal power over God’s people (verses 54-55). This means your sibling’s illness is not going to last forever.
Jesus promised, “Behold, I am making all things new” (Revelation 21:5). Isn’t that amazing? In heaven, your sibling won’t be sick or need a doctor any longer because the Great Physician will cure them forever. There will be no more medications, surgeries, or sick days, because your sibling will walk heaven’s streets free of sickness and disease, praising God forever.
On the good and hard days, remind yourself—and your sibling—that Jesus will one day make all things new, and the road you are walking now is a “light momentary affliction” that is preparing you for heaven (2 Corinthians 4:17-18).
God has placed you in your brother or sister’s life to love and encourage them as they navigate chronic illness, and He will equip you to do it well. As you educate, persist in prayer, enter into pain, and encourage, do so with the joyous hope of the Resurrection in mind. Someday soon, Jesus will return and make all things new, and our broken, earthly bodies will be transformed into heavenly ones.
Copyright © 2023 by Leah Jolly. All rights reserved.
Leah Jolly lives in Grand Rapids, Michigan with her husband, Logan. She is pursuing her Master of Divinity through Calvin Theological Seminary and enjoys writing about the integration of Scripture with family relationships, adoption, daily habits, current events, and other prevalent issues. You can follow Leah on Instagram @leahschnydersjolly.
