Living With A Rare Disease

Today is February 28th. Did you know it's Rare Disease Day? If not, that's okay. I didn't know either until health problems became more prevalent in my home. This day is to recognize those living with a rare disease. Maybe you are thinking of a family member or friend with a chronic illness. I relate to this more than I would like at times. In the last four years, I have struggled with pain from a neuromuscular disease that results in problems with the nerves and muscle atrophy.

In honor of this day to bring awareness, I decided to share more about my experiences with CMT and what the Lord has taught me.

My Experiences With A Rare Disease

Every morning I wake up in pain. It's always unknown how severe or mild my pain levels will be. The symptoms can be in my hands, arms, feet, and legs. Most days include a sharp and stabbing pain in my legs or feet. Another form of pain is a tingling sensation that feels like stepping on pins and needles. It’s similar to when your foot falls asleep. However, it is so much worse. At night, I usually experience an ache throughout my muscles. This is the result of doing too much.

Then there is the fatigue. Fatigue is one of my most severe symptoms and can be difficult to explain. There are days I can hardly focus because of the overwhelming amount of being drained and lack of strength. To help you better understand this, I want you to picture yourself having the flu. There is the weakness and exhaustion your body feels. Maybe you are unable to get out of bed. But, after several days of rest or taking medicine, you recover.

Someone with chronic fatigue is not able to fully recover. Yes, there are ways to help manage the symptoms through rest, supplements and eating healthier. But, it does not take away the weakness in the muscles and the sudden urge to want to lie down. I have learned to adapt and press forward.

What Living With A Rare Disease Means To Me

Living with a rare disease means that I have to adapt to every part of my life. It means wearing my leg braces anytime I leave my home. This disease means I have to plan my schedule carefully. If I have classes, homework, meetings, and physical therapy one day, I have to limit the amount for the next two or three days. It requires always looking ahead in my schedule.

My CMT also means that my body is sensitive to temperature changes. When it's cold, I have to wear gloves over my hands because of the neuropathy. This disease means that I have to use a wheelchair on the days my fatigue is worse. It means asking for rides when I feel that it is unsafe for me to drive home. One of the hardest things is all of the unknowns. I’m not sure if I will be able to follow the career path I have in mind right now.

But, even with pain, the Lord has taught me so much. I have more empathy towards those that are hurting. When a friend is crying, I cry because I know the overwhelming amount of pain life can bring. I also understand if a friend needs to cancel at the last minute. I am learning to let others help me. I'm learning to be patient with what my body can handle. And for two years, the Lord has taught me to be open about sharing my testimony to reach others who are suffering.

Living with a rare disease has many challenges, but I have faith that God will use it for a purpose.