How do you break your life story into segments? By year? Location? What you were doing? In my case I think we should call the next major segment of my alopecia story “the years I had hair again.”
As I mentioned, when I was still 19 years old much of my hair grew back. It stayed, at least in part, until my early 30s. Interestingly, my hair grew back a different texture than it had been before. Once silky and stick straight, suddenly it was more wiry and wavy. In those early years I rarely had a bad hair day… I was so grateful to have hair at all that, as bad hair days were still any hair days, it somehow made them good hair days.
Part of the nature of alopecia is that it can cause sudden, random bald spots to appear at any time for no reason. Honestly…what a stupid disease. While these were years that I had hair, I can’t recall if there was ever a time that I didn’t have at least a few spots on my head. Some were small like dimes, some more like quarters, and occasionally some were larger still. Having experienced what it was like to have no hair at all made it somewhat easier to roll with just having a spot or two, but it also meant that I had a healthy respect for (okay, and a more unhealthy fear of) what could happen if alopecia became aggressive again. For the most part I rolled with it, aside from occasional dreams (nightmares) that my hair had fallen out again all at once.
These years the name of the game was covering up. My eyebrows never grew back, so I went through various phases of learning to draw them on. Honestly, I still haven’t mastered this. I would dearly love to never have to draw them on (and wipe them off and start over) again. But I digress. I found various methods for covering up the bald spots. For a long time makeup was the best option – just color in the spots with dark eyeliner and brush some hair over it. Done. Of course, it was not a perfect solution, because this also meant that everyday activities like sweating or lying my head on throw pillow could cause problems.
Dating during these years was…interesting. That is a post for another day, but I have a huge heart for women who are going through this situation while also navigating the complications of looking for love. After several dates and a few relationships, I started dating my husband when I was 23. This was a super special time in my life, but where alopecia was concerned I can still feel the ghost of panic from several instances when I was afraid my eyebrow makeup may have gotten smudged or come off entirely. I can still see exact setup of the room and remember the feeling of total exposure when I finally let him see me with no makeup whatsoever… and the sheer relief when, after looking at me fully in the face, he folded me into his arms and kissed me.
As an aside, I am beyond thankful that I had my own hair on my wedding day. A wig would have been fine, but I was just delighted to have the experience of going to a hairdresser for a “trial run” and getting pampered in that way on the big day. It was a gift.
The makeup routine lasted for several years, but eventually along came the keratin fiber option. Before I even talk about this, I have to confess something. When I was in high school, commercials began coming out on TV that basically showed people using some kind of dyed hair spray that would cover and conceal their baldness and make it appear that they had a thick head of hair. Oh, how my friends and I laughed about this! How hilarious, to spray paint your head to cover your baldness! Ah, life. It turns out that for those of us who end up actually dealing with this issue, that kind of technology is just miraculous. Basically, they make tiny, colored keratin fibers that you can either shake or spray onto your head but which will adhere to your surrounding hairs and really fill in the spaces. I ended up truly adoring this stuff – if I could have, I would have bought it in bulk. Are you listening, Costco?
Still, no solution is really a perfect solution. The keratin fibers could wash off the same way that makeup could, so I had to take extra care when working out, walking in the rain, or even swimming. As I recall, makeup was always the better solution for swimming. This turned out to be super relevant, as we ended up moving to a beach town for a few years right when I turned 30. While I had my share of worrying about how I looked in a bathing suit on any given day, my much greater concern was my eyebrows coming off in the water or bald spots suddenly making themselves known.
I am thankful to say that I did NOT allow alopecia to hold me back from doing things anyway during this season of my life. I learned to scuba dive, and we went snorkeling and swimming on the regular. I enjoyed so many all-day beach outings with a delightful group of friends. It was lovely…but you’d better believe I had extra makeup and a mirror with me at all times. My husband was my wingman, keeping an eye out for me and letting me know if I needed to slip away to touch something up. I had so much fun, but there was also always a nagging sense of concern because of my hair.
Looking back on this and on the amazing friends we had during this season, I wonder why I hid this so much. Why did I not just tell people what was up and let it go? Why hold on to the nagging fears, why dedicate myself to the complicated dance of concealment?
I am the type of person who loves to hang out with small groups of people. In those cases, I’m not exactly allergic to being the center of attention. I also love to be in the position of “welcomer” – inviting others to be part of a group that I am already embedded in. As it happens, though, due to the nature of my husband’s work and my own professional life, I have often found myself with strangers, larger groups, and inevitable “first impressions” situations. I have never mastered my desire to be just “one of the crowd” in those times, or my strong preference that people get to know me before getting to know my personal health story.
I do not know which is the chicken and which is the egg. Have I always wanted to fit into the background and that’s exacerbated by alopecia, or did this actually begin with alopecia? Whatever the case, it means that even knowing I had a close group of friends with whom I could trust this part of myself, I also knew that I would inevitably be moving away, starting over, and wanting to crawl back into my shell. I just decided it wasn’t worth it.
It’s another story for another day, but one of the greatest challenges of my life was experiencing infertility. For years my husband and I longed for a baby, and we tried for a long time to get pregnant. It turns out that during this season (stress…hormones…medications…) my hair started falling out a lot more. The cover-up game became much more difficult. Thankfully this happened right as we were moving to a new state, a place that I didn’t know anyone.
As we pulled into our new state, we literally stopped at a wig store en route to our new house. Thanks to a surprise financial gift from my parents, we were able to buy a new wig, and because of this, I entered the next phase of my life looking different and feeling different, but also feeling safe, covered, and secure.
Well friends, I think that’s where this part of the story ends, but I will keep thinking about it and share more another day. In the meantime, I hope that today, this very minute, you are doing well, feeling good, living life the way that you want to. I am praying for you today.