I am me, and I am ok.
These were the words that hung above my bed during my teenage years-- Always a reminder to me that I did not need to compete with my peers for acceptance because no matter what, being who I was would always be ok.
Self-esteem and confidence were two things I did not lack as a young woman. Until I was 32 years old. I was in the midst of finishing PA school. I think deep down, I knew what was happening. I did not want to believe people when they told me it was “stress”. Through my studies in medicine, I have learned that stress can definitely take a toll on your body, and can affect everyone in different ways, but not like this. I knew this was different. And, I had been way more stressed in my life! Until this started happening.
I first noticed a weird cow-lick near the top of my head in the fall of 2012; looking back, this is how the process started; I didn’t realize this would be the start of a whole new life for me. The texture of my hair started to change. It was drier, not as shiny, more limp. And then in January of 2013 I saw the first bald spot. It was right where that weird cow-lick had been and it was about the size of a quarter. And then a second one popped up almost identically on the opposite side of my head. And then in March, there was a huge bald spot that took up the entire base of my skull. And then there was all the hair in my shower drain. I have never seen so much hair in my life. Every single night when I showered, there seemed to be more and more.
My friends just told me to stop worrying about it, that it would be fine, it would all grow back. But I did worry about it. It was not fine. And it was not growing back.
I started noticing a large amount of thinning on the top of my head in March. This was what finally triggered me to see the first doctor. He was a family practice doctor that I had rotated with in PA school, and I knew he was one of the smartest people alive and would do every blood test possible to give me answers. Although there were no answers. Everything was normal—or so the lab results said. He offered me an appointment to dermatology, but I declined at that time, because I still had hope that this would all be a temporary process and my hair would miraculously start growing back- the long, blonde, flowing maine that I never had highlighted, yet had perfect highlights; never had to blow dry, yet was perfectly straight; never had to treat with chemicals, and yet was perfectly silky. It was not growing back, and just kep falling out. How was there possibly so much hair that was falling out, yet there was still hair on my head? The daily crying had started. Daily.
Graduation day was upon me. I was graduating from the most difficult and challenging school program I had ever been a part of, and this was my second Master’s Degree. It was now May, 2013. It wasn’t until that graduation day when my dad accidentally took a photo of me as I was looking down that I realized how bad it was getting. And there it was, as visible as I didn’t want it to be—the huge baldness on the very top of my head. I didn’t get upset right away. It would have broken my parents’ hearts. But I was falling apart inside.
About two weeks later I had my first dermatology appointment. And my first round of steroid injections into my scalp. Three weeks later, another round of steroid injections. In the meantime, I was using rogaine twice a day and topical steroids twice a day. I even tried a 3 week course of systemic steroids. There were no signs of improvement. Just more and more hair in my shower drain, and crawling down my body in the shower. I felt like I was melting away, literally. Not only was my hair falling out, my spirit, my confidence, my self-esteem, my beauty, my social life, my boyfriend—they were all fading, and fast.
On my second trip to the dermatologist, he asked if I was wearing my hair different, or if I had really lost that much more hair in such a short amount of time. On my third trip, he told me I should consider a wig, and wouldn’t even do another round of injections because there was so much hair loss. I completely fell apart when he said this. I knew this was going to happen. I had done my research. I knew there were no other treatments I was willing to try. I knew I was going to hear these words, I just didn’t think I would hear them this soon. Actually, I never thought I would ever hear these words. I was 33. Who develops alopecia at age 33? There was no family history…of anything! Why is all my hair falling out? Why now? Why me?
I called and made the appointment that day at a wig shop for a consultation/wig fitting in two weeks. And boy was that the longest two weeks…
It was now August 2013. The only way I could wear my hair was in a ponytail. There was just enough hair on top that I could pull it back to cover the baldness on top. But that “just enough” hair was also growing thinner and thinner, by the second it seemed.
My best friend, Erin, went with me to the wig shop. I tried on a handful of wigs. I actually found a few I liked and they just happened to have one that looked almost like my natural color and a style that I kind of liked. And then they offered to shave my head. I almost jumped for joy, while my best friend had tears forming in her eyes. As she watched, giving me all of her support, but knowing she was secretly thanking God this was not her, I felt like a ton of bricks was lifted off my shoulders. It was the most liberating feeling I have ever had. That was the last day I cried over losing my hair.
Until my eyelashes started falling out. And I didn’t have to shave my leg hair. And I had no pubic hair, or underarm hair, or arm hair, or peach fuzz on my face. And I didn’t have to shave my head again, at all.
Although I wasn’t crying daily like I was before I shaved my head, I still had moments. Moments when I would look in the mirror and didn’t recognize who I was looking at. In the mornings when I would draw on my eyebrows. When I would be sitting home on Friday nights instead of going downtown to meet up with “friends” because I was afraid they might realize I was wearing a wig.
It’s kind of funny because I have three groups of friends now. Those who have been with me every step of the way, those from a running group I joined just as I shaved my head, and then those who still have no idea that I have lost a single hair from my body. It’s been 4 months since I shaved my head. I now have 2 wigs that I rotate. I have not yet worked up the courage to be completely bald and I plan my day with hair or hats, depending on who I will be around. This is definitely a life that I never imagined. So what, I’ve lost my hair…but I’ve also lost part of my identity. I have lost a little bit of my soul. I lost my boyfriend. I lost self-esteem. I lost confidence. I had a patient tell me the other day that she wished she could be as confident and independent as I am, but what she doesn’t know is that I have had the most difficult year of my life, and even though I put up a good front in public, I feel very broken on the inside. My running friends have been my saviors. They don’t know it, but without joining that running group and having people that never once judged me and liked me, bald, from the day they met me, has been the best encouragement I could have ever asked for.
I don’t know the course that Alopecia Universalis will take in my life. My hair may grow back, it may not. It may grow back in patches, it may grow back a different color, it may grow back and then all fall out again. I am working on my self-esteem and confidence. I have learned patience and acceptance, but I know there are many more lessons for me over the coming years. But for now I am bald. And I am me, and I am ok.