When You Grow Up With an Invisible Illness Many People Don’t Understand

When I was 6 years old, I loved to dance ballet, swim, read and play dress-up. I dreamed of becoming a police officer and a ballerina. At 6 years old, my world was turned upside down when I had a severe accident at school that shattered my right arm and caused a severe concussion. After having my arm cast removed, I started to feel continuous back pain.

At first, my pain was minimal and hardly noticeable. But shortly, the pain became so intense, I was forced to stop all of my favorite activities, including my greatest passion: ballet. It was a painful daily struggle just to get out of bed. Watching me suffer, my parents didn’t know how to react to this. They knew I was ill and knew I was suffering from something.

Looking for an answer, my parents took me to our family pediatrician. He told my parents I was a hypochondriac and recommended psychiatric help. From the suffering my parents saw me go though, they couldn’t accept his misdiagnosis.

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For the next five years, I went from doctor to doctor, specialist to specialist and hospital to hospital with no success. During this time, I continued to battle the pain’s medical and social consequences. To tame the pain, many doctors experimented with a variety of medications, which lead to a variety of negative reactions, including severe allergic reactions.

During these long bouts of pain and recovery, I couldn’t go to school. I had to stay home. Most of my time was spent around adults, including family, home-schooling teachers and medical personnel. It was extremely difficult to make or maintain friendships with other children.

In sixth grade, my parents found a doctor, who was finally able to diagnose me. I was suffering from fibromyalgia. My family was relieved that I finally had a diagnosis, but the label of fibromyalgia would impact me more negatively than I realized. Since there was, and still is, a stigma that fibromyalgia is not a real medical issue. Some people see it as just another form of hypochondria.

After my diagnosis, I came across caring and compassionate people, such as my sixth grade teacher who also had fibromyalgia. She helped me to better understand and cope with fibromyalgia.

Unfortunately, for every one person who helped me, I had four people trying to convince me that fibromyalgia was fake, and that “my pain was all in my head.” This also included a pediatrician who was a parent of one of my classmates. Due to her unrelenting persistence, I had to stop talking to her daughter. At times, the emotional pain of people rejecting the legitimacy of my illness hurt more than the fibromyalgia.

As difficult as puberty can be, fibromyalgia made it five times more difficult. To deal with this new level of pain, I had medication injected into my spine, twice a week, for six months. Since I was allergic to the topical numbing, I had to take the shots in my spine without it. Luckily, one of nurses gave a wad of gauze to bite down on during the injection treatments.

In middle school, I struggled to find a middle ground between treatment and my education. By high school, I was finally able to find a balance. For pain management, I mostly relied on physical therapies for my pain management. My schooling was split between two classes on campus and home schooling. This gave me the opportunity to be on campus just long enough to feel a part of the high school experience without wearing myself out. I struggled in high school more so than previous grades, trying to relate to my peers. But I found comfort in writing poetry and short stories, history (music, film, television, mythology, social and cultural) and knitting.

Today, I’m a part-time college student majoring in sociology and a novice writer. I aspire to publish books with subjects varying from autism to obscure true stories about major historical events and eventually a series of poetry books. Although I can no longer dance ballet, I have found another dance that not only allows me to express myself, but also helps my pain by making me more flexible: belly dancing. It’s a fun dance that makes me happy every time I do it.

Growing up with fibromyalgia has been turbulent. Despite the pain, fibromyalgia has been my greatest teacher. It has given me experiences and opportunities to meet people I never would have known without it. But fibromyalgia’s most important lesson has been compassion for those who also suffer from what they cannot control.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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