I Won’t Let My CIDP Diagnosis Take Away My Dreams
This article was written by Maddy, an actual patient. She was compensated by Takeda Pharmaceuticals for her time to share her story.
Think about your senior year of high school. Does prom come to mind? At the start of my senior year, 17-year-old me highly anticipated prom night. When I went dress shopping, I had my best friend with me — along with my physical and occupational therapists — because putting on dresses was my “therapy” that day. I couldn’t help but think of what led me to rely on two strangers for help trying on prom dresses.
I’m Maddy, and this is my story of living with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare and chronic neurological disorder that primarily affects the arms and legs. To learn more about CIDP, visit www.knowingpn.com/CIDP.
I am the youngest of three raised by remarkable parents. Growing up, you’d find me fishing, watching sports, playing dress up, getting crafty, and dancing around the kitchen with my parents. On my own, I’d explore behind the levee, play in my tree house, ride my bike, and participate in school and community clubs.
In my pre-teens, I started experiencing numbness and tingling in my hands. This led to a rheumatologist ordering bloodwork, which showed rheumatoid arthritis (RA) factor. That made sense with my family history of RA, but my symptoms worsened. At the beginning of my senior year, my mother asked if I’d like to visit friends. I ran out of the house, only getting about halfway before collapsing. I was so confused. My mom noticed my struggle to get up and asked what happened. I had no idea.
I conveniently had a rheumatologist appointment two days later. Mom mentioned I had fallen unexpectedly. He had this confused, worried look and said, “I think it’s time to see a neurologist.”
That moment stuck with me. His look and words left me scared and frustrated. I was angry that the doctor I trusted was telling me to see another doctor. I interpreted this as starting back at square one.
In mid-October, I saw a neurologist for electromyography and nerve conduction tests. After reviewing the results, he returned and bluntly stated my diagnosis of Charcot-Marie-Tooth (CMT) disease. His temporary solution to this permanent nerve-damaging disease was boots.
My mom was so upset at the delivery of the news that we left. The ride home was quiet but loud with my thoughts. I asked myself, “How do I process this?” I was just stretching my wings, and now I’m told I will never fly.
At school, more people noticed I struggled walking to class and typing on the computer. I couldn’t explain why. I had a diagnosis, but I didn’t want to accept it.
As days passed, I went to my first homecoming dance. I relied on friends to help me walk, but I wanted to be free and dance. I held back because I was nervous, knowing everyone around me wouldn’t be careful, and I didn’t want to fall. I felt as if my soul was being pulled away — I couldn’t enjoy myself. This was my last weekend on my feet before having to use a wheelchair.
Fortunately, I found someone very special — my neurologist. She ran her own tests to confirm my CMT diagnosis, and her results showed lower numbers, so CMT was no longer an option. She scheduled a lumbar puncture. She didn’t give me false hope or disregard questions. She always explained everything gently and kindly. Most importantly, she spoke directly to me even though I was 17. I felt respected.
On November 5, 2010, she diagnosed me with CIDP. I had the choice to start treatment immediately or take the weekend. I used that weekend to process my new diagnosis. I was then hospitalized for several days for treatment and was later transported to an in-patient rehabilitation center for six weeks to continue managing my condition. Thankfully, I had the penthouse suite. It was huge! It overlooked a courtyard with boutiques, restaurants, and a movie theater. On weekends, friends and family would visit. But even with all that, I wanted to escape.
My best friend was also frustrated. One day, while we were visiting outside, she asked, “Do you want to escape?” I said, “Yes, please!” She wheeled me past the liability line, and we went exploring! This adventure may have only been 10 minutes, but it was needed freedom.
Another day while I was still in in-patient care, I was served cereal with no spoon or the assistive device required to hold the spoon. I pressed the nurse call button. No answer. I pressed again. Still no answer. Feeling forgotten and unable to access what I needed broke me — and I cried for the first time since my diagnosis. Three months earlier, I could get the spoon myself and use the muscles in my hand.
I wanted to hold onto the pride I had in being self-reliant. I had been holding everything in, believing I was being strong by not conveying my questions, thoughts, feelings and emotions.
I was discharged shortly before Christmas, returned to school, and started out-patient therapy. For three hours daily, I worked on regaining the strength in my hands, arms, and legs. I set my goal to walk the stage at graduation and take my diploma in my hand. In April, my therapy took the form of dress shopping for prom with my best friend. And that’s where we started this story. I went to prom in the most beautiful dress, and the following month I accomplished my goal during graduation.
Life with CIDP forced me to grow up faster than I wanted, and my initial anger didn’t disappear. I started to direct it at myself and asked, “Why me? Will I forever be defined by CIDP? Who else has gone through this? Can I ask them some questions?”
Since my diagnosis in 2010, I’ve had dreams and achieved them — though some have been modified. I graduated with an associate degree in business management from a community college rather than my preferred four-year university. The next week I accepted a position as a receptionist where I had out-patient therapy. I also volunteered to speak to newly diagnosed CIDP patients at the hospital and was able to share encouragement, exchange stories, and show them that they’re not alone.
Most people who are diagnosed with CIDP aren’t 17-year-old girls. In fact, most of the newly diagnosed patients I talked to were older men — many of them had life partners who vowed to be by their side in sickness and in health, which I adored. Being so young upon diagnosis, I didn’t have that yet.
I wondered, “How do I explain to someone I love what this could mean for our future? Will I be able to have a family with children?” The most my OB-GYN could tell me is that it would be a high-risk pregnancy. I’m unsure if it’s possible and I must accept this. However, finding a partner willing to journey into the unknown — together — is something I’m not willing to define myself as undeserving of.
I don’t think CIDP has taken away any of my potential. I believe I am the only person in the way of my dreams. I refuse to give up on myself or allow CIDP to define my dreams.