A Diagnosis Isn’t Everything: How to Live with Hope in the Face of a Chronic Illness
Words are powerful. I remember when we received Audra’s diagnosis of eosinophilic esophagitis (EoE), those two words brought such a mix of emotions. On one hand, there was relief in knowing what we were dealing with and hope that we could do something about it. Yet at the same time, the diagnosis seemed to bring a sentence on her life that broke my heart and brought into question what the future would look like for her.
Even with our more recent endoscopy to see if we could take Audra off her medicine, we had to grapple with the effects of disease and the power of a diagnosis again. The results revealed to us that her disease was still there. Although to a different degree, we had to mourn all over again the fact that those hopes of our daughter being free from EoE weren’t yet a reality.
While Audra’s quality of life is truly wonderful in spite of the label of EoE being on her and the reality of a daily dose of medicine, I was still a little caught off guard by the power of the diagnosis. Those scientific words have had such an effect on my thoughts and emotions.
It’s so easy to think about hope as this cheerful, happy feeling that always wins over the circumstances we face. But the reality is that the emotions of discouragement, disappointment, anger, or fear are still very real. How do you hold onto a hope that isn’t at the mercy of the emotions we face along the seemingly unending rollercoaster of a chronic diagnosis? Can hope be deeper than a feeling of happiness that’s dependent on whether or not my child can shake the label that a diagnosis brings?
One of our core values is that a diagnosis isn’t everything because we believe that those few words you get from the doctor don’t have to define you and your family. Those words don’t have to define your hope for a beautiful future. We still need to accept the impact that a diagnosis may have on our daily life, but we don’t have to be defined by it.
We are still learning how to hold onto hope along our journey, but we wanted to share a few things that have helped us to strengthen our hope and deal with the sometimes difficult emotions and realities of a chronic diagnosis.
Look for What’s True and Good About Your Child
A diagnosis doesn’t change the beautiful and inspiring qualities about your child.
In times when symptoms are especially present, the things that we admire — the person that God has made Audra to be — haven’t changed. In fact, new hopes and dreams may emerge as you embrace the truth about who your child is. Here’s what I mean:
Audra is a strong little girl. Her name means noble strength. There were times that I worried about whether her EoE would cause fear or worry to dominate, but Mary Beth and I have continued to look for and encourage those glimpses of strength and bravery in her. As we live with EoE, we’ve seen in big and little moments how that characteristic of strength and resilience has played out. In spite of the diagnosis.
Our dream for her has always been that she would live out of a noble strength in knowing that she’s a child of God. Through her story, God has morphed that dream in our hearts to see that she can live a life where the impact and example of her strength is greater because of the path that she’s walking with her EoE.
I could go on about other truths we see in Audra like gentleness, sensitivity, and freedom (I am a proud dad after all). Look for strengths in your child, too, and hold onto them. Verbalize them to your child. Pray those qualities over your child. And ask God to give you a glimpse of His dreams for your son or daughter.
Connect with a Community that Will Support You
When we feel defined or limited by a diagnosis, it’s easy to feel alone. Especially in times when a diagnosis seems weighty, look for family, friends, your church community, or others to listen and help. Seeking out people to love and support you is one of the greatest things you can do for your family.
Whether you are able to find another family that has experienced the same circumstance as you or not, there’s something immensely helpful about having some nearby that will check in on you, help with errands, or just be present.
As you look for local community around you, you may also enjoy reading our stories, or commenting on our resources, knowing that the helloHOPE community supports you and is praying for you.
Fill Your Mind and Heart with Promises
Another challenge to a chronic diagnosis is that it can turn our world upside down and call into question what we believe about God. Is He good? Does He want good things for my child? How can He allow sickness?
We’ve grappled with many of these questions, and the reality is that we’ve drawn so much strength from searching for God in the questions and looking for His promises. I certainly don’t feel like I have the answers to all of the questions, but He has encouraged us with His promises. He has reminded us that we aren’t alone and that He hasn’t left us along our journey. Here are some promises that you can stand on:
God’s presence with us
The Lord makes firm the steps of the one who delights in him; though he may stumble, he will not fall, for the Lord upholds him with his hand. Even to your old age and gray hairs, I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you… For I am the Lord your God, the Holy One of Israel, your Savior...
(Isaiah 46:4, Isaiah 43:1-3, Psalm 37:23-24)
God’s protection over us
God did this so that, by two unchangeable things in which it is impossible for God to lie, we who have fled to take hold of the hope set before us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure. We wait in hope for the Lord; he is our help and our shield. You are my refuge and my shield; I have put my hope in your word.
(Psalm 33:20, Psalm 119:114, Hebrews 6:18-19)
God’s peace when circumstances are crazy
The Lord gives strength to his people; the Lord blesses his people with peace. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
(Philippians 4:6-7, Psalm 29:11, John 14:27)
God’s wisdom when we aren’t sure what to do
If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. For the Lord gives wisdom; from his mouth come knowledge and understanding. The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
(Proverbs 2:6, James 1:5, Isaiah 40:28)
Struggling with big questions about illness? You may find these posts helpful: Why is my child sick? Finding hope in the tough questions or How to overcome adversity with a foundation of hope.