My Story My Life: Living with an Auto Immune Disorder - Alopecia

By Guest Editor on Nov 6, 2017

Approximately 6.8 million people in the United States and 147 million worldwide have or will develop some form of alopecia. While alopecia areata is a common autoimmune disease that results in the loss of one's hair, it can start with one or more small, round, smooth patches. There is another condition, alopecia univeralis, which is a form of alopecia where you lose all of your body hair. Either of these disorders can occur in males and females of all ages and races, but onset most often occurs in childhood. Alopecia is not medically disabling; persons with alopecia are usually in excellent health. But emotionally, this disease can be challenging. While sitting down with Chuck Thielman, a Las Vegas resident who has dealt with some form of alopecia since his mid-20s, I couldn't help but notice a fierce confidence and positive self-image, which is something that many people without this disorder fail to achieve. Here is his story, in his own words.

Heredity can play a role for someone being diagnosed, but I don't have a family history of alopecia. When I was diagnosed in my early 20s, I originally only had alopecia areata, which is localized hair loss. Since alopecia doesn't run in my family, it was something that not only myself but everyone around me had to take time to understand. Just as we were figuring out what alopecia areata was and understanding what to expect, the unexpected happened. I started to lose more hair, and a few years after my first diagnosis, I was diagnosed with alopecia universalis, which is complete hair loss, total body.

Being an active person, I was concerned at first that I would have limitations with my diagnosis, but quickly found out that wasn't the case. You don't realize how much you count on hair in your everyday life though. Without eyebrows, I didn't have a barrier for sweat getting into my eyes. No eyelashes meant dust and debris constantly get into my eyes, which is why you will see most people with alopecia wearing glasses. I can't even explain what it is like to have a runny nose without nose hair. But, I have no limitations, and living life is not much different than anyone else. 

The daunting part of having alopecia comes in two forms. The first was becoming who I am today. I lived over 20 years with normal body hair, and then I didn't. Many people who have this disorder can be hindered with low self-esteem and a regret of what was instead of seeing what is and living to their fullest potential. When I lost my hair, I felt "off," but over time I was able to stop caring what others thought or said and became who I wanted to be. The second daunting part is educating those around me. My family and friends were receptive and most made time to do their research, but society can be relatively shallow, and many people will stare when I walk into a room. Beyond the staring, I've had people ask if I was a burn victim or sick with something like cancer. I politely take this opportunity to educate them a little bit about alopecia in hopes of helping others they may encounter with the same disease. 

My daily life includes a lot of double takes, especially from kids. Most of them comment that I look weird or scary, which is why it is important to continue to teach compassion for others. I will never forget one little kid who asked me if I was allergic to hair because it is pretty accurate.

Alopecia isn't a death sentence, and it doesn't take years off your life, it just is what it is. While it can be daunting being newly diagnosed or going throughout your life explaining your condition, you have to have confidence in who you are because people eventually look past your disease and look at who you are. 

If you or someone you know has been diagnosed with alopecia, visit naaf.org to learn more.