My Story (Part 1)

My alopecia story is still unfolding, because I have alopecia now and I will always have it. My hair has come and gone over the years, and each instance has brought some level of joy or sorrow. I want to share this with you because somehow in sharing our stories, we grow to own our own stories. I need and want to own this part of myself. More than that, I want to share it in the hope that someone reading this will hear something, anything that resonates and helps in some way.

As this has been a story over 20 years in the making (so far), we should break it into segments. Let’s just talk about the beginning, for now…

I was a relatively healthy kid growing up. I could be klutzy and injure myself in silly ways, but I don’t recall being sick or having major health issues as a child. That changed in college. During freshman year I had emergency surgery to remove my appendix before it burst. 9 months after that, during the fall of sophomore year, my shoulder-length brown hair began falling out. I started noticing more and more hair in my hairbrush and in the shower, but I didn’t think much of it at first.

My parents and younger sister came to visit me during parents’ weekend (so probably the October timeframe). We were getting ready to go out and I had put my hair in a ponytail, when my sister pointed out that I had a bald spot on the back of my head. Wait…I have a what? The timeline details are fuzzy in my memory, but my mom soon helped me to see a dermatologist and they took a biopsy of my scalp.

I will never forget standing in my dorm room, answering the phone, and learning that the biopsy was positive and that I had something called Alopecia Areata. I threw the phone across the room as hard as I could and ran out the door. I am not usually a runner, but I ran around and around the quad as fast as my legs could carry me, over and over again. Running away from that news, the first truly bad medical news I had ever received.

Within a matter of weeks, my hair began falling out in clumps. The thinner and thinner it got, the more and more I was mortified to be seen in public. I began wearing bandanas. Hats. Anything to cover it up. I will never ever forget wearing a hat to one of my finals and the terror I felt that the professors might ask us to remove our hats for the test. I almost cried when we were instead asked to turn all hats backwards so brims were behind our heads. As an adult I have to wonder this was a general policy or whether my professor saw me sitting there and showed mercy in that moment.

Over the Christmas holiday, my mom took me to see a wig maker. This was when my love-hate relationship with wigs began. That is a conversation for another day, but it’s an odd feeling to so deeply appreciate, need, and want something that you also resent and at times even loathe. I came back to school in January with a suddenly thick head of hair and pretended to myself that people didn’t really notice the change. I think I have spent years of my life convincing myself that people don’t notice what they aren't looking for.

Somewhere in there my mom also took me to see an excellent and highly reputable endocrinologist. In case you haven’t noticed, my mom was on TOP of all of this and really, really took care of me through it. After lots of tests and discussions, I walked away with some oral medications, topical creams, and instructions to eat a low sugar diet.

My dad arranged for some elders in the church to gather and pray over me. They anointed my head with oil, laid hands on my body, and prayed for healing. I remember feeling so relieved by this. I know my parents prayed me through this season of my life.

Second semester was an odd dance of remaining social and going to classes while also sneaking to the shared bathroom in our dorm corridor at quiet times of the day to wash my wig in private. I learned to style my new hair and enjoyed the benefit of being able to actually see the back of it while fixing it, since I had to take it off anyway.

One of the most memorable things to happen during that time was that my roommates just surrounded me with love and support. When I had basically one strand of long hair left on my otherwise bald head, my dear friend sat with me while I wept and encouraged me as I took a pair of scissors to it. My friends put cream on my head every night. They treated me the same as ever. They named gave my styrofoam wig stand a woman’s name, which then became our code word for my wig and has been my code word for it ever since. Over 20 years later, I still use that name, and it still somehow makes it all more okay.

Unfortunately, this wasn’t my only health issue sophomore year. The short version is that I got a raging case of strep throat, which eventually led to shingles on the back of my neck and then to Bell’s Palsy on the side of my face. It was at this point, with no hair, an exhausted body and half of my face out of order that I withdrew from college for the remainder of the semester and went home.

My mom took me to a neurologist for the first time, and thankfully my brain seemed to be in working order. I was given physical therapy exercises for my face, and my mom made sure I did them. Thank God for my mom.

It was during the summer that I noticed something. My hair was growing back. Like really growing back. All but one large spot toward the back of my head. I continued to wear my wig and we enrolled me in summer classes back at college.

I stayed in an off-campus apartment that summer, with my friend who had named the wig stand and a friend of hers that I hadn’t known before. They were both very supportive and never treated it as weird that I took my hair off at night. Then suddenly another friend, a boy, came to stay with us for a few weeks. I was absolutely horrified… not that he would live there, but that he would know. He would see.

Eventually after hiding my alopecia within my own apartment over several days, I caved. I couldn’t live like that. I told him about my hair, and the year I had had, and I cried. I took off my wig and showed him the short “boy hair” style growing underneath. Then he did the most amazing thing and I will never, ever forget it. He cried too. He cried with me and hugged me and he later wrote a poem about boy hair, saying that it was a GOOD thing. I will always be grateful for his kindness in one of the most vulnerable and exposed moments in my life.

Over the summer my hair continued to grow and my face slowly began to heal. I finally stopped wearing my wig and moved to wearing only a tiny hairpiece (aptly named “Tiny”) to cover the one larger spot on the back of my head. And then, just like that, junior year began.

I am amazed as I write this with how full my heart feels right now. I thought I would feel grief and sorrow, putting this pivotal part of my life to words. While I keenly remember some of the stressful moments (and I did choke up more than once while writing this), at the end I am left feeling touched by the many, many blessings I experienced during this season. My parents were (and still are) amazing. Supportive. Loving. Present and engaged. Praying for me. Fighting for me. My friends were (and still are) wonderful. Generous. Kind. Supportive. We were able to find and have access to excellent medical care and wig makers. I was able to heal. My face came back. My hair came back, for a time. And I went on to do some things I had dreamed of doing, like studying abroad during the second semester of my junior year.

We all get used to our own “normal.” This morning I woke up, drew on my eyebrows and eyeliner and put my wig on, just like every other day for the past 8 years since my hair fell out once again. Then I got my sweet son ready for his school day, kissed my husband, had a cup of coffee, read the Bible, read the news, and got on with life. Taking time to write this story and remember the past reminds me that while my normal is definitely not the norm for other people, it is fine. It just “is,” and it’s what I do with it that really matters.

I would love to hear your story, alopecia or otherwise, if you are willing and wanting to share. Tell me in the comments or just send me a note through the Contact page. I would so like to know you.

Lindsay