Q&A with Katerina: “Even if you feel alone, God will always be by your side.”

Today I get to introduce you to Katerina, who is a dancer and teacher, as well as a college student working towards a bachelors degree in psychology.

Last year she started a blog called Beauty in the Pain to share her journey with the neuromuscular disease CMT and encourage those who struggle with chronic pain.

I’m so glad she reached out for an interview because I’ve been so blessed to read how she is adapting her passion for dance and seeing God’s faithfulness in the midst of chronic illness.

I hope you’re encouraged by this conversation with Katerina on chronic illness, faith, and perseverance.

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Interview with Katerina from California, age 22
On the gift of compassion, life with CMT, and seeing God’s faithfulness

Cassie: What is something you love or something God has given you a passion for?

Katerina: What first comes to mind is dance. I started taking ballet classes when I was around five, and my passion has continued to grow. I felt drawn to movement and expression because I was quiet as a child. I even had my heart set on being a dance instructor and teaching young girls to dance for the Lord.

I also have a passion for choreography. During my senior year of high school, God opened the door for me to begin teaching and choreographing dances.

I discovered that I can still create dances even though there is a movement that I’m physically not able to do. Though it’s been harder to continue the last few years, I am blessed to be able to adapt movement when needed or even dance while sitting in a chair. Many of my pieces come from the seasons of deep sorrow because of my constant pain and are reminders of God’s faithfulness to carry me through.

Cassie: Please briefly share the names of your chronic illness along with a brief description.

Katerina: I have Charcot Marie Tooth (CMT). CMT is a neuromuscular disease that affects my peripheral nerves and leads to muscle atrophy. I was diagnosed during my senior year of high school because of the nerve pain in my feet and struggles with walking.

There are constant struggles of pain and fatigue. This last year, I started noticing the nerve pain in my feet, hands, legs, and arms. My balance is also affected due to the weakness in my muscles. The hardest part with this illness is not knowing how much my pain will continue to progress. This genetic disease affects everyone (even those in the same family) differently.  

Cassie: What is one of the most difficult challenges you’ve experienced due to your illness? How has that challenge shaped you? 

Katerina: One of the challenges I face is the balance between doing too much and not enough. Because CMT leads to atrophy in my muscles, I need to stay active to help slow down the chance of those affected areas getting weaker. However, if I do too much, it can cause my CMT to progress faster. I also wear leg braces whenever I leave my home to help with the fatigue and struggles with balance. A few months ago, I started using an electric wheelchair for the hard days on my college campus or where there is too much walking involved. And now I recognize that it is even more important for me to exercise or stretch because I’m relying on leg braces.

The challenge has shaped me into showing more compassion and understanding toward those who are hurting. If I didn’t struggle with my health, I would have missed out on some of the most meaningful conversations with people that have chronic illnesses or disabilities. God has blessed me with communities of those I can interact with because I know what it feels like to live with constant pain. 

 

 

Cassie: What is something you would like people to better understand about your illness?

Katerina: I’m okay with being asked questions about my illness and disability. I don’t mind sharing. When I first started experiencing chronic pain, my CMT was very invisible. Most people did not see the challenges I had with dance or even something as simple as walking to and from a parking lot.

But, there have been many changes because of the progression of pain and other symptoms. Now, I wear leg braces and sometimes use a wheelchair. It’s hard because I feel that my disability is visible anytime I leave home. So to answer this question, I want others to know that I’m okay talking about why I have challenges. It hurts me more to see people ignore me or stare and walk away because they are uncomfortable about approaching me. I know that everyone with illness is different, but I would rather talk about it than bottle all of my pain inside.

Cassie: Tell me about a time when someone came through for you when you were going through your health struggles.

Katerina: The first person I thought of was my mom. She has always gone out of her way to help me through the constant struggles with my chronic illness. Recently, she spent time researching to find me an electric wheelchair that would allow me to save more energy when I’m on my college campus or going out.

There are almost no words I can say for how much my mom has gone out of her way to help me. She is always there when I need encouragement and a listening ear. She comforts me when my pain is overwhelming and has supported me through some of the hard seasons. I continue to thank God for her every day.

Cassie: What advice or encouragement would you offer to someone going through chronic illness?

Katerina: It’s okay to cry and feel upset. You are constantly experiencing daily pain, health challenges, and overwhelming symptoms. Don’t feel like you have to hold it all together every day. Allow yourself to grieve the changes with your illness and what you have lost.

Maybe your story is similar to mine and you grew up healthy and then got sick. Maybe you just received a diagnosis and are not sure how to get through the pain. Maybe you are still waiting for answers to why your pain is so severe. No matter where you are at this moment, know it’s okay to be upset at the current circumstance. You are going through so much.

But, don’t stay in that place of feeling lonely or scared. Allow someone close to you to help you back up from a season of tears and sadness. Take one moment at a time, friend. Know that you are loved and cherished by the God who is always faithful. Even if you feel alone, He will always be by your side.

Cassie: What is something God is teaching you recently?

Katerina: God has been teaching me to be okay with accepting help from others. During my spring semester of college, I started using a wheelchair on campus. At first, I wasn’t sure how to ask others for help. After all, I’m a young adult and have only recently transferred to this college. I wanted so badly to enjoy the independence and not feel like a burden to my friends. But I noticed the first few times using my wheelchair, I needed help opening doors or moving chairs in the classroom. I found that my close friends always offered to help me and others started to do the same.

Through these experiences, I learned it’s not a sign of weakness to ask or receive help from others. It’s an act of humility. When someone I know shows kindness by offering to assist me, it shows they care. They don’t see me as a burden.

This makes me think of the kindness and compassion that Jesus showed. He didn’t show frustration when someone needed help instead He was gentle and listened patiently. The gentleness from Jesus is a beautiful reminder that we are called to serve others with that same love. So when someone takes a moment to open a door or get something for me, I see it as an act of Christ’s love.

Cassie: What is something you are most thankful for right now?

Katerina: I’m thankful for creativity. I love spending moments writing or drawing in my journal. It’s so refreshing to sit outside and focus on the beauty of God’s creation instead of the distractions and chaos that life brings. Some of my favorite moments this summer have been sitting in silence and listening to what the Lord wants me to hear. Then I will open a notebook or laptop and spend moments writing and listening to music.

Cassie: Are there any resources you can recommend that encourage you through your chronic illness?

Katerina: The Diamonds Conference and Community Group have been an encouragement to me for over a year. This is an online conference for chronically ill Christians. My friend Sara Willougby first started this beautiful online event a few years ago, and her story is inspiring. I recommend this for anyone struggling with a chronic illness or pain and is needing a supportive environment of others that understand.

There are some books I would also recommend. One is When Chronic Pain & Illness Takes Everything Away by Esther Smith. Another one I started reading last month is Dark Clouds, Deep Mercy: Discovering The Grace of Lament by Mark Vroegop. I’m also encouraged through music by Ellie Holcomb, MercyMe, Lauren Daigle, and Anne Wilson. 

Cassie: I’m a bookworm and I have to ask: Read any good books lately?

Katerina: To be honest, most of my books these past few years have been college-related. But, I have grown up in a home where there are several bookshelves and books everywhere. So naturally reading is something I love. One of my favorites is the Narnia series by C. S. Lewis. I love the adventures that Peter, Susan, Edmund, and Lucy go on in The Lion, The Witch, and The Wardrobe. That one is my favorite because of the interaction between the characters and the adventure they went on in Narnia. I can relate to Lucy because she is capable of more than others realize. Her bravery is inspiring.

I also have been reading books that have helped me through my struggles with chronic pain. Such as A Place of Healing by Joni Eareckson Tada and Life Is Messy by Matthew Kelly. Both of these I highly recommend.

Cassie: What is something else you would like people to know about you?

Katerina: My family is such a blessing in my life. I am the second oldest of four and I love that we all have unique gifts and passions. Spending time with my family is such a blessing. We also adopted a dog named Max last year, he is a Belgian Malinois. He is sweet and gentle. And he brings me joy when I’m experiencing severe pain.

My dream and plan for the future is to be a Child Life Specialist. In this field, I would be helping children and their families in hospitals cope with their illnesses and do playful therapy with the patients. I felt the Lord calling me towards this line of work because I can understand some of the pain they go through.

Along with this dream, I also have a love for writing. I titled my blog Beauty in the Pain because there are beautiful things even though suffering is constant. And since I started it God has blessed me with having others write guest posts and share their stories.

Thank you Katerina!

We’d love to hear from you in the comments, so please let us know if you relate to Katerina’s story, discovered new information, or have any questions for us!

How are you adapting something you’re passionate about in the midst of chronic illness?

 

Read more Invisible Illness, Visible Worth interviews here.

Interested in being interviewed? I’d love to help share your story! Find the details here.

Opinions and views are those of the interviewee. This blog post is meant for informational purposes only and is not intended as medical advice.

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