Living with CMT - Olivia's Story

“Why do you run on your tippy toes?” my cousin asked when we played soccer together as kids. It was a little weird, but we laughed about it and kept going like it meant nothing. Who knew that this would be the start of something much bigger.

Hi! My name is Olivia, and I’m 22 years old. I’m from Columbus, Georgia, where I was born and raised. I’m a dog mom and I’m autistic. I really love listening to music, writing poetry, doing crafts, and spending time with my family. I’m not currently in college or working due to health issues, but I love to dog-sit on the side! I’m passionate about mental health and chronic illness, and I love advocating for both.

MY CMT JOURNEY

When I was little—around age 5 or 6—I often complained about pain in my legs and feet. After a while, we went to my doctor. When my pediatrician examined me, trying to figure out why, I was told it was just growing pains. At the time, that explanation seemed to make sense, because I didn’t have a clear diagnosis. I remember thinking, “I guess I didn’t realize how bad growing pains could be.” But all along, that was incorrect—and it led me to live even longer without the real answer: CMT.

When I was 9, my health issues began, starting with stomach problems. I remember that was the first time a doctor asked me to walk. I was confused by the request but awkwardly did it anyway. He noticed I was struggling. I remember feeling so anxious—trying to perfect my movements—yet realizing my legs and feet weren’t working normally. He mentioned it might be something neurological, but that was soon dismissed. I was passed back and forth between different doctors until my GI specialist referred me to Children’s Hospital in Atlanta. I was being seen for migraines, still unaware of the disease hiding in the background. I started having nerve pain for the first time when I was 14, and the doctors there sent me to the MDA Clinic. After some more specific testing, we discovered I had a type of neuropathy. When I was 16, I finally got an answer after genetic testing: I have Charcot-Marie-Tooth disease, type 1X. And we realized my mom also had CMT as well. 

This diagnosis increased my anxiety, and I didn’t like what it entailed. The uncertainty of my future felt like a wave crashing over me—I couldn’t breathe for a moment. I was also diagnosed with several other chronic illnesses during that time, which made it even harder to care for my body. I was glad to finally have a diagnosis, but knowing the symptoms would worsen was scary. Since then, I’ve been working on correcting my walking. I started wearing AFOs, completed an intensive robotics therapy program, tried different procedures, and continued working with my doctors. Treatment is a long, hard journey—and it’s tested my limits.

CMT affects my life in a big way and can be really difficult to manage. It impacts the peripheral nerves, causing significant weakness in my body. It affects things like my balance and walking, leading to foot drop and more. Being diagnosed changed things for me in many ways—some bad, but also some good. I wouldn’t wish this condition on anyone, but I’m grateful for the growth it’s brought. I’ve been stripped of many things and lost a lot—but I’ve gained a lot, too. I’ve learned so much along the way, and that’s shaped me into who I am today. I’m also incredibly grateful for the support I get from my parents and the CMTA community—they really help me feel less alone on this journey.

Through my CMT journey, God has been the strength that gets me through. My faith is incredibly important to me, and I rely on His help to make it through each day. I know He has a purpose for our pain and is working for our good. Though we still may struggle daily, Jesus is with us—and He will continue to guide you and me through this crazy journey. CMT won’t win—because Jesus already has the victory.

Encouragement

One of my favorite songs right now is “No One Knows” by Samantha Ebert. I really enjoy her music because I relate deeply to her experience with chronic illness and how she expresses that through her lyrics. There’s one part of the song that says:

Cancellin’ plans

When I need people most

Grievin’ my old life

But I’m not that old

They say, “You look well”

But there’s a war in my mind

I truly understand that experience—and I think anyone with a chronic illness or disability will, too. CMT often causes me to miss out on things I really want to do. I grieve what my life used to look like before the challenges began. And I remember all the times I tried so hard to hide my CMT because I was afraid of being judged. My condition is often invisible, but over time I’ve brought visibility to it. I’ve gained the confidence to speak up about it and to be comfortable with my differences and extra needs. Like finding the bravery to use mobility aids—such as a cane or wheelchair—both of which have made life a bit easier for me.

These lyrics remind us that we are not alone, and that we are truly seen, even in our suffering. When people around us don’t understand, we can rest in knowing that Jesus does. He knows it all and empathizes with our pain like no one else can.

Remember this:

Take it one day at a time.

Advocate for yourself.

Celebrate the small wins.

Know you are fully seen.

Olivia Dennis is a 22-year-old who lives in Columbus, GA. She is a dog mom, autistic, and loves poetry & nature. In her free time she enjoys listening to music, spending time with family, and doing creative things. Olivia is passionate about chronic illness & mental health and encouraging others struggling. Jesus is the joy of her heart and she loves to express that through her life & writing.