In honor of Invisible Disabilities Week Oct. 17-23, I’ve collaborated with fellow writers MaryBeth Eiler and Kellie La Follette to offer some of our experiences with invisible disease and disability. Whether an invisible illness is deeply woven into your own story or of someone in your life, our desire is to offer you hope and encouragement. This blog is one of three in the series. Don’t miss our special gift to you at the end of the post.
Mass Radiation Burns.
Vascular Ehlers-Danlos Syndrome.
Labels we didn’t want held gifts we never expected. Living with an invisible illness feels like living with a secret. You carry around pain or burdens you want to blurt out as soon as you meet someone. Or you bury them so you can interact without the baggage. Never really knowing the right balance, social awkwardness threatens to creep in. You worry you’re too much or not enough.
Along with the struggles, however, there are beautiful gifts that come with chronic illness and disability. As the three of us have moved from shock to fear to acceptance of our diagnoses, the discoveries of God’s goodness have unfolded in grace-filled layers.
Kellie La Follette, a mass radiation survivor who suffers from debilitating chronic pain 24/7, describes it like this: “Have you ever watched someone who is meticulous and painfully slow at unwrapping gifts? They loosen the tape and lift the paper in anticipation of the treasure inside.”
“Finding gifts in disability feels similar,” Kellie continued. “Often many layers have to be lifted slowly over time before gifts begin to be revealed. It is important to believe the gifts are there and worth searching for.” She reminds us of Deuteronomy 4:29, which promises, “But if from there you seek the LORD your God, you will find him if you seek him with all your heart and with all your soul.”
Though our individual struggles are unique, the three of us share many overlapping joys as God has etched His goodness into each of our stories. We pray we can help you see the invisible gifts brought by suffering as you face your own uncertainty and pain.
The Gift of God’s Presence in Pain
As believers, we’re taught God is omnipresent; He’s everywhere. But many times for believers, illness and weakness tend to strip away self-sufficiency and give us a Spidey-sense of God’s nearness. It shouldn’t be a surprise, as God’s Word tells us He’s near to the brokenhearted. The Psalms assure us when we’re in the deepest pit, He’s there. The journey of the Israelites through desert and conflict confirms he’ll never leave or forsake His people. Romans 8 tells us nothing can separate us from His love.
“God shifted from a nice concept to a very real presence. Not in the abstract, but in the day-to-day. Not in the big picture, but in the details,” shared MaryBeth Eiler, who at the age of 25 was diagnosed with a recurring benign Desmoid tumor that’s brought pain, numerous surgeries and chemo treatments.
MaryBeth continued, “The more I paid attention, the more I came to know God as someone who shows up in my weakness; someone who stays when I feel my worst; someone who isn’t deterred by my questions and doubts; someone who cares about my every need.”“The more I paid attention, the more I came to know God as someone who shows up in my weakness." MaryBeth Eiler Click To Tweet
Kellie, who suffers from vision loss along with her constant pain, said other senses such as taste, smell and touch are often amplified when sight is compromised. “While that hasn’t been my experience so far,” says Kellie, “what has been amplified is the awareness of how very near the Lord’s presence, the Holy Spirit, is. He is the greatest gift and brings joy and peace into my life that surpasses all understanding.”
For me, too, the nearness of God has shown up in unexpected places as I face life with a connective tissue disorder resulting in aneurysms and fragile organs and arteries. For example, in the operating room, as I’m ready to fall asleep for another surgery, comfort comes from the kind words of the anesthesiologist. “We’ll take good care of you,” she whispers. Or the reminder from these words taped up in the secular hospital check-in area: Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9
God is near, indeed.
The Gift of Two-Way Encouragement
While people with invisible disabilities don’t want to be identified solely for their disease, it’s a gift when others recognize your needs and attend to them. It’s humbling when friends show up with meals or your favorite snack, simply sit and listen, or send a handwritten note of encouragement. Practical help provides welcome support, such as going to a doctor’s appointment with you or watching your kids.
While we’ve adapted to a “new normal,” living with an illness every day doesn’t mean we’ve fully embraced the limitations or don’t face fresh challenges. Sometimes we have to grieve the little losses, and it’s nice to have a friend acknowledge those along with us.
On the flip side, through the comfort we’ve received, we’ve grown in our capacity to comfort others, no matter how imperfectly. God tells us His comfort gives us the ability to comfort others in the same way (2 Corinthians 1:3-5).“Invite Jesus into your hard story, and see your world change forever even if your circumstances don’t." Kellie La Follette Click To Tweet
“Before my rare disease diagnosis, I used to feel unequipped on how I should respond to difficult circumstances faced by family and friends. This often paralyzed me into doing nothing,” says MaryBeth. “Now I know it’s okay not to have the perfect words (no one does). I know it’s okay not to necessarily say anything, but the act of showing up makes an impact.”
For me, I’ve definitely grown as a listener, realizing I don’t need to rush to a tidy conclusion for someone’s pain. Quiet listening and shared tears go a long way.
Kellie, a former teacher, mountain climber, marathoner, and race car driver, has now become an unwavering hope bearer, encourager, and intercessor. With her online group, Reframing Rain, she helps others “reframe” everything from mud puddles to catastrophic loss, gently sharing fresh perspectives through prayer, encouragement and hope in Jesus.
“Invite Jesus into your hard story, and see your world change forever even if your circumstances don’t,” encourages Kellie.
The Gift of a Smile
We can smile because, through our illnesses, God has given us eternal perspective and appreciation for today.
“A smile doesn’t mean I am not in pain. A smile is part of my best attempt to live above pain and reflect what’s in my heart,” says Kellie. All of us agree our joy doesn’t remove pain or disappointments from living with a disease, but it makes it more tolerable.
“No one has endured more suffering than Jesus,” adds Kellie. “Yet, He is still on His throne and He has kept his promise to never leave me. His life, death, and resurrection prove suffering is not the end of my story or yours. That means regardless of how I feel physically, I have something to smile and be joyful about every single day.”
“My rare disease diagnosis has changed my life in both hard ways and beautiful ways. My oncologist said recently, ‘It is impossible not to see the image of God in people in their rawest states,’” says MaryBeth."I smile because, even with an uncertain future, there are many things I’m certain of, including God’s faithfulness." Erica Baldwin Click To Tweet
“While I never would have chosen this journey for my life, it’s through living with a rare disease that I’ve experienced the presence of God and met people who radiate His goodness,” MaryBeth adds. “It’s a gift I’m not sure I could have gained any other way. The journey is hard, but I continue to smile because I trust God has even more goodness in store for me in this life.”
Finally, I smile because, even with an uncertain future, there are many things I’m certain of, including God’s faithfulness, knowing pain is not wasted, suffering won’t last forever, and today’s gifts are to be embraced and enjoyed. I’m certain goodness and mercy will follow me all the days of my life (Psalm 23:6). I’m confident I will see the goodness of the Lord in the land of the living (Psalm 27:13).
Sometimes the most courageous thing you can do is to look for God’s good, unexpected gifts in your suffering. We know you’ll find Him most generous.
Continue reading the series by visiting these posts:
WORDS: Coping with the Weight of Words and Invisible Illness (and what actually helps) by MaryBeth Eiler – Words hold weight. If you live with a chronic illness or rare disease, you may have felt the lasting sting certain words can leave while also experiencing the undeniable hope offered through words when you’ve needed them most.
ADVICE: Invisible Disease & Disabilities: How to Discover Blessings, Joy, and Smile Again by Kellie La Follette – Offering collective wisdom on finding hope in invisible disease, Kellie gives advice to both the chronically ill, who have faced deferred hopes and dreams, and to friends and family who wish to love them well.
Hope for Those with Invisible Illness (& Those Who Love Them) + FREE download
We have a FREE resource for you, whether you are living with an invisible illness or you love someone who is. We created this webpage just for you, where you can download the Invisible Illness Inspirational Bundle full of Christ-centered hope through Bible verses, quotes, book recommendations, songs, and more. You’ll find encouragement and practical advice on loving someone well through words and actions. We’re hosting some fun giveaways during Invisible Disabilities Week Oct. 17-23, so stay tuned via social media!