I was becoming obsessive.
Everytime I passed a mirror, I inspected my part line. My temples. The back of my head. I parted one way. Then the other. Then in the middle. Oh gosh no, not the middle, slick it back. But now the temples show.
When I didn’t have a mirror I was pulling out my phone. I took pictures of the places I couldn’t see. Sometimes they didn’t look too bad, like an hour after I showered and blow dried my hair (I started blow drying again, because it helped hide the patches). But usually my hair sat flat on my head and I could see my scalp peeking through the stringy strands. And is it just me or has my hairline receded?
My hair got oily in less than a day. Less hair, but the same amount of oils. So I was washing it more often. And in the shower I would gently massage shampoo into my scalp then pull my hands away to find my fingers coated in strands with the roots still intact –not breakage, they were falling out of the follicles.
How did this happen so quickly? I had been on methotrexate (a chemo med) for like 2 years, and while my hair had thinned significantly in that time there was never any bald spots. I didn’t even realize just how much thinner it was until I finally got a haircut and it only took 10 minutes.
It used to be that every hairdresser I ever met remarked in amazement over how much hair was packed on my head. It took at least an hour to do a layered haircut.
But still, it was only noticeable to myself and maybe Max if I pointed it out.
But a few months ago my liver function escalated, and lowering the methotrexate dose didn’t help, so my rheumy took me off the methotrexate and prescribed a new chemo med: leflunomide.
It only took a week to get my first bald patch.
Every day got worse and worse.
So I reached out in some women’s hair loss Facebook groups, and discovered the world of wigs.
Yep. If you’ve been wondering why I’ve suddenly been doing my hair so nice during quarantine… She’s a wig. I got her from a fellow “wig sister” new with tags for a quarter of her retail price. In case you care, she’s Julianne by Ron Renau.
I started chatting with my besties and they helped me shop for nice headband wraps and fun wigs with colors I would never be brave enough to dye my actual hair like.
But I was still obsessing. I was at the point where I didn’t even want to walk around the house without a headband or scarf.
I jumped into another Facebook group. A shop called “bunny knots” makes these turban things. You may have seen my daughter in one before.
They make adult sizes too, so I posted in the group asking if anyone had used ones they wanted to sell, since I was losing my hair.
I was met with offer after offer from the most compassionate strangers to buy some for me. One woman gave me a gift card she had for the shop. Another ordered a new one to have shipped to me. Another bought me a bundle of 5 used ones being sold by another kind woman who gave us a deep discount.
I had scarves. I had bunny knots. I had a nice wig that felt me. And more wigs coming in the mail. I was ready.
I was sick of obsessing. Of looking in mirrors and being compelled to inspect my head. Of how stressful showers had become. Of trying to figure out every day how I was going to hide. Of waiting for the day when it would be too much.
So Max buzzed me. It was emotional and the biggest relief.
The next day I told my family. My mom already knew I had been losing my hair, but I hadn’t told anyone before we buzzed it. I needed that moment to be just me and Max. (But I did film it for posterity, lol).
The response from my family was overwhelmingly supportive… Except I got nothing from my dad. I was worried. When I got a pixie cut 7 years ago he didn’t like that. I had no idea how he was going to react. Finally I couldn’t take it anymore and asked my mom directly, “how did dad react?”
“Well, just wait for the video to send.”
Uh… Video??? I wasn’t sure I wanted to SEE his reaction…
A video loaded, along with some pictures. The video was of my dad taking clippers to his own head.
“Solidarity,” my dad said. I finally had his response.
I’ve recieved more support and kindness in the last 3 weeks than I’ve ever seen before. I’ve felt it from complete strangers. I’ve felt it from other women who are in this with me. I’ve felt it from the people I love and who love me most.
Max has been unbelievably supportive. He hasn’t skipped a beat. He’s a fan of my new buzz cut and my wigs. Neither weird him out. He’s been my rock, as always. And I couldn’t have taken these steps without him.
All I ask is for you to put away your pity. Don’t see me as “sick.” I’m not. The chemo makes it possible for me to get out of bed in the morning. Yea losing my hair sucked, but I’d rather lose my hair then go back to where I was two years ago, bedridden and in constant pain. And the side effects could’ve been so much worse. I’m lucky.
This month has been so hard. But I’ve also felt so loved. And I’m so glad I finally took back control of my hair. Now I can focus on the fun 💜