Guide Note: Jessica grew up in a small town in Eastern Iowa. I met Jessica in the 4th grade when I joined the community. I've always been impressed with Jessica's beauty and strength, and I was equally thrilled and touched when she agreed to share her story about living with Alopecia. The following pages are Jessica's words, memories, and lessons.
I began losing my hair when I was 6 years old. It started out as small bald spots that my mother strategically covered with cute barrettes. We were hoping it would go away. It didn’t.
What in the world does a mother do with a little girl who is losing her hair? Who would ever imagine something like that happening to a 1st grader? It was such a strange thing to happen and why was it happening?
We visited our family doctor who then referred us to a dermatologist. He was a very nice man that told us a very unpleasant thing; I had Alopecia Areata. What the heck is that? What causes it? How do we make it go away? My mother had a lot of questions, to which the doctor didn’t have many answers.
Alopecia has three main forms: Alopecia Areata, which usually presents itself as bald spots on the scalp, Alopecia Totalis, which is usually a loss of all hair on the scalp, and Alopecia Universalis which is total loss of all body hair, including eyebrows and eyelashes. I’m not a doctor, and I’m sure there are many more technical terms than this, but this is basic and how I explain it to other people.
It’s an autoimmune disease that attacks hair follicles, which basically means when a person has Alopecia, their body thinks hair follicles are a foreign body, like a germ, and that person’s immune system fights against it. This person is usually otherwise healthy. Alopecia doesn’t really affect anything but your hair.
So here’s the bad news: there is no known cause, and there is no known cure. The good news is that there are many treatments that seem to work for a lot of people.
We tried every treatment the doctor could think of including pills, creams, and injections into the scalp (I always got a new toy after the injection into the scalp appointments). Most of these medications were some form of steroid, which had unfavorable side effects, and though many of these treatments have worked for other people, they did not work for me.
The spots grew bigger throughout the next couple years, resulting in almost all the hair on my scalp falling out by the summer after my 2nd grade year. During that summer, it was decided I would have to wear a wig to cover the hair loss. Keep in mind this was about 1987, and the advancements in wig making were not where they are today.
We visited a couple wig shops and found one where the people were extremely nice and they were familiar with supplying wigs for people with medical hair loss. We bought a wig. I began my first day of 3rd grade wearing a short, curly, gross, brown old lady wig. It was awful, and I was mortified.
My mother spoke to the school before I showed up to tell them about my “situation” and asked if they could do anything to help educate the other children to help dispel any ridicule I might face. The school’s response to this was to show my class a video about a girl who was a little person, and the challenges she faced. As children just beginning the 3rd grade, we were a little lost as to how this applied to us.
Of course there were questions, but by that time I was beyond shy and didn’t offer much in the way of answers. I wanted to pretend nothing was wrong and wanted everyone else to do the same. Some kids were great and treated me the same as they always had. Those kids are still some of my closest friends today. Others were not so nice. We all know that kids can be mean, and boy, were they. A favorite pastime of the mean kids was trying to pull my wig off in front of crowds of other children. I honestly don’t know if the teachers didn’t see this happening or if they didn’t know how to deal with it, but they did not intervene.
I built a shell and crawled into it. I tried to hide. I literally did hide sometimes. I found reasons to stay inside for recess, and to not be around the other children. I faked being sick to stay home a lot. There were many tears.
I honestly don’t know what could have been done differently. Maybe more appropriate education to the other children would have helped, but it couldn’t have hurt.
But you know what? That little girl made it through elementary school. Yes, I was a bit on the shy side because of it, and my self-esteem was pretty bruised, but I had a good little group of friends and having them helped me tremendously. There are so many worse things that other people go through every day, truthfully, I probably got off easy.
By the time we reached junior high school, it was no longer news to them. Wigs had gotten better and looked more like real hair. They could forget I was different and so could I. I played sports, went to sleepovers, had my first “boyfriend”, my first kiss, and boys asked me to slow dance, just like any other 13 year old girl.
When I reached high school, I had found myself and my self confidence. I was a regular kid and all of my classmates thought so too. I had low moments, but what teenage girl doesn’t? Once, a boy who had poked a little fun at me in the past, almost started a fight to defend me, because a boy from another school made fun of my hair during a volleyball game (of course, I do not condone fighting, but it meant a lot to me at the time). This helped me realize that no one thought of me as an outcast, but as a peer and a friend.
During the time from 6 years of age to 18 years old, I experienced all three stages of Alopecia: Areata, Totalis, and Universalis. My body has compromised with me and settled Alopecia Totalis. I think this is reasonable. If I can’t have hair on my scalp, at least I get to keep my eyelashes and eyebrows.
Continue reading Jessica's Story as an adult with Alopecia on page 2.