“I often hide behind a smile and say that I’m okay. I would rather know how someone else’s day has been. I often look like I have it all together with my hair pulled back and wearing earrings or some make-up. I’m usually never late. And I rarely call out sick. Even though I feel sick.
No one rarely knows or even can guess I’m in pain. It’s part of having an invisible illness. Even those like family or friends who know about my chronic pain may assume I’m feeling okay when I show up. But, in reality, I probably rested before going and then barely moved after the event. I spend a lot of my time resting or lying on my bed. Sometimes I feel up to reading or working on another writing project. Lately, though, I need to rest in silence. You wouldn’t know that though just by looking at me. Or how I debated to even go out when I wasn’t feeling well due to the fatigue. And you probably wouldn’t know that I’m trying my best to ignore the pain so I can focus on the conversation. That is unless I told you.
I live with a progressive neuromuscular disease, CMT. Charcot Marie Tooth disease is a strange name for something that affects the peripheral nerves and weakens the muscles. But, that’s because it was named after those who discovered it. I never even heard of CMT until a family member was diagnosed around ten years ago. My diagnosis came a few years later, although it was not something anyone in my family ever suspected. There is no cure and not much that seems to help. I mostly experience nerve and joint pain, tremors, tightness in my muscles, circulation problems, and fatigue.
Over the years, I have learned how to adjust as the symptoms continue to progress. On a typical day, I wear AFOs (ankle foot orthotics) as they help my body, feet, and ankles with balance, stability, walking, and fatigue. I sometimes use a handicap placard if I’m struggling more physically. And I rarely leave my house without water, snacks, and a jacket. I struggle a lot with temperature changes and having a snack helps me feel better after any form of exercise. I’ve tried all of the medications, PT, and other forms of remedies to reduce the pain. Not much has worked. On the more challenging days, I’m in bed because of the fatigue. It’s been affecting me more lately and I feel like I barely can move. Even the most basic tasks require energy. But, even with modifications, I still struggle with pain. Although, on the outside, I hide it well.
But, it hasn’t stopped my determination to pursue my passions. It’s all because of God and support from family, friends, and others along the way who also struggle with an invisible illness. There are moments when I don’t feel like I’m able to continue my love for dance and working with those with disabilities because of my pain. But, somehow along the way, I’ve been able to make it work. My passions have just looked a little different than before. I mostly now teach dance and choreograph pieces when I can. I also love writing. I started sharing my journey of chronic pain and faith a few years ago. It’s probably something I never would have done before. And I enjoy learning. I guess that’s why I didn’t stop even after graduating with my bachelor’s in psychology. My dream is to be a Child Life Specialist. I’m continuing to take one step closer to being in a field that helps not only patients as they are faced with uncertainty but also families as they navigate challenges being in a hospital.
Until then, I will continue to take one day at a time. I know that while I feel physically weak due to pain and fatigue, there is still so much I can do. Sometimes that’s through making it out the door and being there for someone who is having a hard day. They may not know I’m in pain, but that’s okay.”
Katerina
