Coping with the Weight of Words and Invisible Illness (And What Actually Helps)
In honor of Invisible Disabilities Week, I’ve collaborated with two fellow chronic illness sufferers, Erica Baldwin and Kellie La Follette to offer some of our experiences with invisible disease and disability. At first glance, you would never realize underneath their smiles, they are reaching deep past pain and broken dreams to share the gifts and wisdom they gathered along the road of living with an invisible disease or disability. Despite their circumstances, they continue offering light and hope to the world.
Whether an invisible illness is deeply woven into your own story or of someone in your life, our hope is to offer you encouragement. Don’t miss our special gift to you found at the end of the post.
The most powerful words you can say to someone with an invisible illness is…I believe you.
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. Words can both hurt and heal while navigating an invisible illness.
What actually helps? And what can leave a lasting sting? Erica Baldwin, Kellie La Follette, and I share our own experiences from navigating through life with invisible disease.
Overcoming Words that Hurt
From the onset of an invisible illness journey, the sting of words can be felt.
Maybe it’s the offering of a spiritual band-aid, like:
- “God uses all things for good.”
- “Everything happens for a reason.”
- “So many people have it much worse.”
- “You need to…”
- “When a door closes, God opens a window.”
While sometimes true, these platitudes aren’t always timely. And although well intended, they are like putting a BandAid on a broken heart.
Maybe it’s the dreaded question of “what do you do with all your time?” with its unspoken implication that our worth is tied up in our productivity.
50% of people with chronic pain say their loved ones sometimes doubt the severity of their pain.
Or maybe you’ve heard the dreaded words, “have you tried…”
People may be quick to offer solutions discounting the reality that we have tried—traditional, natural, East, West, North, and South. No one wants to be better or find an answer more than we do.
People’s best intentions can sting, often failing to realize the weight of their words. If you find yourself constantly worn down by words, consider lovingly offering these resources to family and friends:
- In Grief, What Not to Say (What to Say Instead) by Lisa Appelo
Cherishing Words that Help
Easy answers that soothe pain, sadness, or ache are impossible to find. We often go looking for the perfect words to say, but those who have suffered know simple words or deeds are cherished most.
- “I’m sad too.”
- “This is so hard.”
- “I don’t know what to say or even how to help. But I’m praying you know God is near and that He loves you.”
- “I’m sorry you’re in pain today.” “It’s okay to rest.”
- “I believe you.”
While there are no perfect words that will change our circumstances, another’s presence to our pain can lighten the load.
Helpful ways to offer presence:
- Listening. Even if we are repeating ourselves or sharing the journey of the latest physical battle, talking out loud helps us process what’s happening.
- Love in action. Instead of asking “What can I do?” go ahead and do something practical like offering to care for a child, or bringing food or a restaurant gift card. These actions remind us we are still “us” — people who love coffee, and funny movies, and being in the company of others.
- A note of support. Send a pressureless “thinking of you” text like, “I’m deliberately not asking how you are because I don’t want you to feel the need to reply—but if there is anything I can specifically pray for, please let me know! Big hugs!”
- Stay in touch. Even if it’s hard or it’s changed from how it was before, a friendship can help lift the fog of self-focus. One that endures is a testament to God’s love.
Clinging to Words You Are Grateful to Hear
Exposing my need was a grace that allowed another’s empathy to surprise me with hope.”
K.J. Ramsey, This Too Shall Last
There are many moments in the battle against an invisible illness where a friend, family member, or medical provider does something seemingly simple, yet it leaves a profound impact. These words and moments are gifts that keep on giving.
Sometimes, the words we need to hear are a simple acknowledgement of the pain that others cannot see, which Kellie’s doctor one day passed along to her:
“Kellie, it is real. Your nerve damage is beyond the computer’s ability to count. I can’t get the images of your nerves out of my mind. Please tell me how you are living. I have patients committing suicide from pain with significantly less damage than you have. Help me learn so I can better care for them.”
Or maybe it’s the words you didn’t know you needed to hear: “I dropped something off on your porch. Love you.”
Accepting help can be hard, especially at the onset of a diagnosis when we long for our old “normal.” Friends and family who show up without asking are a beautiful blessing.
Words we are always grateful to hear:
- An “I’m thinking of you” text
- “I brought you something” whether it be a meal or a gift card or a laugh
- A verse or song that brought you to mind in this season
Words to Help Carry You Through Invisible Disease
Words of hope can be found throughout Scripture—not always showing up in the way we might expect.
In the Psalms, we are given a glimpse into a Biblical response to human suffering. Through the psalmists, we see how to display our grief, how to ask for help, and how to keep our trust in God even amid confusion and chaos. There is freedom found in uncovering that God does not turn away from us in our pain, but instead provides strength in our weakness.
This is my comfort in my affliction, that your promise gives me life. – Psalm 119:50, ESV
God’s promises of his current mercy and hope in Christ are meant to offer us great comfort. Suffering won’t last forever, and God is attentive to our needs:
It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. – Deuteronomy 31:8 ESV
And on the days we are filled with fear or anxiety—before a scan, surgery, or another unknown along the path—we can repeat this mantra: “God goes before me and never leaves me. Don’t be afraid or discouraged.”
The picture of God going into a literal room before us can bring great comfort, as does the visualization that He’s there with us.
And when we need God himself, may we know that He is always there:
…for He has said, “I will NEVER under any circumstances desert you nor give you up nor leave you without support, nor will I in any degree leave you helpless, nor will I forsake or let you down or relax My hold on you assuredly not! – Hebrews 13:5b
Our Gift to You—The Invisible Illness Inspiration Bundle
Do you need a place to direct your thoughts and encourage your heart when you’re feeling discouraged? Find Christ-centered hope through Bible verses, quotes, book resources, songs, and inspiration all in one place. Download your FREE Invisible Illness Inspiration Bundle:
Continue reading the series
Advice
Kellie offers advice for those with invisible illness— like respecting your speed limit—and to those who wish to love their chronically ill friends well—a card or folded laundry goes a long way.
Gifts
Labels we didn’t want brought with them unexpected gifts. Erica shares how each of us have grown in our understanding of the nearness of God and His grace to recognize hope in the pain.
Meet the Contributors
The Invisible Illness Inspiration Bundle
Do you need a place to direct your thoughts and encourage your heart when you’re feeling discouraged? Find Christ-centered hope through Bible verses, quotes, book resources, songs, and inspiration all in one place.
By downloading the Invisible Illness Inspiration bundle, you will be signed up for MaryBeth, Kellie, and Erica’s email lists. If you find the emails don’t serve you, simply unsubscribe.