My Alopecia Story

I always thought I was different. In fact, I knew it. I was determined to be different in every possible way from the time I was little.

I changed the spelling of my name every year from kindergarten until my first year of college.

                 Jenny

          Jeny

                               Jennie

                                          Jenie

                                                           Jenni

                   Jeni

                                  Jenn

                                                                  Jen

                       Jehn

   Jennifer

                                             Jenifer

                                                                 Jenne

                             Jene

                    Jenna

When I had hair, I'd do it as crazy and random as possible. And I'd dress in my own 'special' style.

I just had to stand out. I wanted what came so naturally to me to be what defined me.


But when I was in 6th grade, and was at the mere age of 11, I underwent the most defining moment of my young life. I was sitting on the ground as my mom brushed my light blonde hair. As she brushed, she found a bald spot about the size of a quarter on the back of my head. We were curious so we went and saw Dr. Nekoba (our family doctor). He diagnosed me as having an auto-immune disorder. It was called ALOPECIA AREATA and we were told my hair would grow back. But as weeks passed, my hair started falling out more and more until there was a bald patch about the size of an adult's hand. When we went back to the doctor, he said I had ALOPECIA TOTALIS. It was a type of Alopecia where you lose all the hair on your head. It was a shock, but because I was young, it wasn't too big of a deal to me. I was told there was only a 50% chance of the hair growing back. But I was hopeful. 50% was still a big percent. But as the months passed it was clear-- all that hope was for naught. I ended up losing my eyebrows, eyelashes, all the hair on my head, and all the hair on my body. I had ALOPECIA UNIVERSALIS. The hair fell out in clumps. I would hop in the shower and the floor would be covered in hair. I would fall asleep and when I'd wake there would be a pile of hair on my pillow. Still, I took pride in my hair. I didn't let my parent's shave my head. I was once again determined. Determined to wear the hair I still had proudly and I did just that until every last hair fell out. We like to joke that the last hair was pulled out by a good friend, but let's be honest-- who knows what really happened to it.

It was a few years before I met anyone with Alopecia, and I think that was the hardest part.

People assumed I had cancer, and most of the time I wouldn't correct them. In middle school PE my teacher would ask if it was a "good day" or a "bad day" to see if I needed to sit out for the day, and I would lower my head and say "it's a bad day". Some would consider that a blatant lie. I instead chose to taken advantage of my situation, and to be honest, half the time it wasn't necessarily a good day. I would get stares, people would make comments, even children would ask why that "boy" was bald. It didn't bother me. In fact, I embraced it. My friend, in middle and high school, would joke with me and in front of a crowded hallway, we'd act all serious as she'd say, "I can't be friends with a bald person". People would act shocked, some actually were. But we'd meet up a few minutes later and just laugh. Being bald became my identity, it became part of who I was.

When I went to college everything changed.

See, people had gotten used to me being bald. After a while, people realized I didn't have cancer and were okay with me being bald. It started out as a burden to me, my family, and my close friends. But as the years passed, it became a blessing. But, when I got to Brigham Young University for college in 2008 no one had a clue who I was, why I was bald, or anything about Alopecia. I was starting from square one... again. People's stares weren't just out of curiosity anymore, they were cruel stares. People would judge, they would make comments, they would make assumptions. I had to find the right time to say, "hey, actually, I don't have cancer". I had to explain I had an auto-immune disorder. I had to explain what Alopecia was again, and again, and again. It became harder and harder. I started to feel ridiculously self-conscious. I began wearing a wig regularly, that I had only 'showed off' in high school once. I didn't know how to wear it, or do the hair to look natural and so I looked incredibly awkward. No one said a word. No one wanted to offend me. It wasn't until years later that I looked back and saw that. I realized how embarrassing it was for me-- that no one said a word. For the next year or so I'd wear my wig to classes, to church, out with friends or to school events. I'd wear my wig every sunday, and some semesters, I'd wear it every day to class. I was so worried that people would be cruel that I lost my identity completely.

It took years to finally be comfortable in my own skin, literally.

But I got over it. And I had the support of my family, church leaders, and some really good friends. They reminded me of the little girl who lost her hair those many years before, and reminded me that I was still different despite the baldness. I was still me. I stopped wearing the wig. My roommate Halee would tell me every time I considered wearing my wig that she liked me "better bald", that I was beautiful. And soon enough, I believed it too.

Since I've been to college, I've met others with Alopecia. Girls and boys. Men and women. I think that helps me just as much as it helps them to know someone else with the disease. Meeting someone with Alopecia is a wonderful wonderful feeling. It's like for a moment you're not alone, in fact, in the moment after that moment, you're still not alone. Because you realize there are others out there who feel just like you, and have been in similar circumstances-- always being asked if they have cancer, being told they look like a boy, being called sir, or brother.

I haven't changed the spelling of my name in years. I don't have hair to style anymore. I don't dress like a crazy person. But I am still determined to be different. And I am. And I wouldn't change my experiences for anything. Do I still wish I had hair? Every day. Do I still wish I could feel the wind blow through my hair? Every time I drive with the windows down. Maybe someday I'll be lucky enough to have hair once again. But for now, I'll tell the little kids that I'm a girl, and that my hair fell out when I was 11. I will tell people that I don't have cancer. And maybe, just maybe I will forget for a minute that I am different, and I'll just pretend I blend in. And then in an instant, I'll go back to being me. Maybe that minute will be wonderful, and maybe that minute will be a glimpse into my future. But I will never stop being different. Even in that minute. Because being different is just who I am, and I wouldn't want it any other way.


- J