Crown of Glory: My Life with Alopecia
You don’t know this now but
There’s somethings that need to be said
And it’s all that I can hear
It’s more than I can bear
What if I fall and hurt myself
Would you know how to fix me?
What if I went and lost myself
Would you know where to find me?
If I forgot who I am
Would you please remind me?
Rosi Golan, Hazy
I have nice hair. When I say that, I don’t mean it in a vain, I love myself so much, I think I’m so beautiful kind of way. I say it after years and years of hating it. I say it now in quiet thankfulness and appreciation–after over 30 years of wishing it wasn’t my hair.
Growing up, I always wished I had the sleek, short bobs I’d see other little girls wear- their hair would bounce as they walked–swish swish swish. I admired their hair–light and beautiful–their crowns of glory. Mine was kept long, almost to my waist for most of my childhood. A plain brown and so heavy, I have enough hair for three people. As soon as I realized I could tell my mom, no, I don’t want long hair anymore, I defiantly chopped my hair short, my senior year. And I looked like a mushroom head. It’s so thick it had no where to go but out. Parts of it frizzy, wiry underneath, other parts straight mixed with waves. My hair would never swish the way I longed for it to.
As a young adult I started pulling it back in a sleek ponytail. Trying to hide its poofiness. And one day I learned about flat ironing. It would take me almost an hour to get it all smoothed out, plastered flat against my head. But I loved it that way. A way it wasn’t meant to be.
A way God didn’t make me.
My husband said my hair was the first thing he noticed about me in the college class where we first met. I was a first grade teacher, back in college to brush up on my Spanish. It was in the middle of that semester I started flat ironing my hair–Chris sat behind me–and as I settled into my chair, he tapped me on my shoulder and told me: Your hair looks really nice.
It was the confirmation I needed to hear–keep flat ironing those pesky waves, some parts straight, some parts frizzy, keep making it be something it wasn’t.
I met Chris in 2003. It wasn’t until 2013…10 years later, that I finally stopped trying to make my hair conform to something it wasn’t. Most times I still have my hair up in a ponytail because I’m running or working out 5-6 days a week–but when I wear it down? I let it be exactly the way God made me. With 4 kids I just didn’t have time anymore to spend 45+ minutes straightening it.
And the more I let it be in its natural state, I started to let myself do something I hadn’t done in over 30 years–I let myself like my hair. That’s a long time for someone to not like a part of who they were created to be.
I saw this on Instagram the other day and it spoke to my heart: “And if I asked you to name all of the things you loved, how long would it take to name yourself?”
It took me too long. Nearly 30 years of wishing otherness.
One thing I’ve learned in all these years of running long distances, is things come and go. People. Pain. Happiness. Joy. Sorrow. Friendships. Highs and lows. So perhaps, when I learned I have alopecia–I wasn’t completely surprised. Devastated, yes. But not once did I think, why did this have to happen to me? It happened because it is life.
When my hairstylist was cutting my hair a little over a month ago, she discovered a bald spot and asked me if I knew it was there. I didn’t. I had no idea my hair, my crown of glory, was balding. I had no idea how long strands of my hair had been slipping away until I was left with a large bare spot.
I have alopecia.
After almost two months of reading about it, seeing doctors, and telling the people I’m closest to about it, it’s still hard for me to say that out loud. Because after all those years of not liking my hair, and finally learning to appreciate the way God made me–finally seeing part of me as lovely, it hurts to know it is being taken away from me.
I have prayed countless times to God, asking Him how I should use this platform I have, MyFitFamily, and many times He has revealed to me–by sharing my heart–that is how I can glorify Him. And so even though it’s still hard for me to talk about, I know sharing this can be used for good.
Because there has been so much good to come out of it.
When I came home from that hair appointment, it was on my husband’s birthday. I was getting my hair done so I would look nice for his birthday dinner that night. The kids and I had wanted to surprise him with a limousine ride to his favorite restaurant. And when I came home after that hair appointment he looked at me and said: You look beautiful! He of course had no idea I had just learned I have alopecia and was just complimenting my ‘done’ hair. Between sobs I told him: I have a bald spot. He looked confused but said, Let me see it. And in his tone I heard, it can’t be that bad. I pulled my hair to the side and revealed it to him and those words I knew he wanted to say: it’s not that bad couldn’t come out. He couldn’t lie to me, his wife of over 11 years. Instead he grabbed me in hug and let me collapse into him in tears and heartache. And I apologized for ruining his birthday.
Over the next few weeks as I researched, saw doctors, and wondered out loud to Chris: What if I get more bald spots? What if I go completely bald? What I really wanted to know was:
Will you still think I’m beautiful?
In times like these, I’m forever reminded: God gave me a life partner who is my rock. Chris holds me up when I feel weak. Encourages me. Cheers me on in my life dreams. Why would I think this would be any different? Discovering I have alopecia was like shining a spotlight on the part of our marriage that makes it work–two people who love each other during the highs and the lows. In sickness and in health. Wasn’t that our promise to each other? Before friends, family and God? Chris’ faithfulness to our vows is unwavering.
And when I finally decided to tell my children about it a few days ago, knowing I was going to write this blog post, I wanted to tell them before they found it out from someone else. I wasn’t sure what to expect but I started with, There are some people who have something called alopecia and it makes their hair fall out. My 7 year old twin son had a typical boy response and said: That sounds gross! It was then I realized how their own mom having alopecia could teach them so much about compassion–something this world needs more of, more than ever.
I was surprised that I did not let one tear slip from my eyes that usually betray me. Instead I calmly described what it was and gently let them know that their own mommy has it. It took them a moment to realize: Mommy! You’re bald?! I asked them if they wanted to see it and they all said yes, so I carefully pulled my hair back to show them and heard three little gasps of shock. And my son, the one who first said it was gross, upon realizing his mommy had a bald spot, said, It’s OK. He got quiet and a few moments later asked:
Can I pray for you?
Sure, I said…heart bursting and quietly thanking God for giving me these precious children. But I added, Can we also pray for all the people who have alopecia? Not just me…but all of us. There are a lot of us in this world who have it (147 million worldwide). Some have it like me…just a spot or two (alopecia areata) …some people lose all their hair (alopecia totalis) and some people have lost every single hair on their body and head (alopecia universalis)
That day my children truly learned compassion. In a real world, first hand experience. They learned alopecia isn’t gross. They learned that people who have it are people who look just like me–someone they love. We talked about how people who are different from us are mommies, daddies, children, brothers, sisters, aunties, uncles, cousins…they have feelings and they were made by God to be exactly who they are meant to be and for that reason alone, we should never look at a person who is different and think/say: gross.
That night I went to be and prayed, thank you God for showing me how to help my children learn to be more compassionate people.
Some days I don’t even think about my alopecia. Other days I let my hand find my spot, I can do it without looking now, my hand has traveled to that bare spot so many times in the last two months that I know exactly where it’s at without looking–and I let my mind wander to the what-ifs? What if it doesn’t go away? What if I get more spots? What if…what if I lose all my hair?
What if. If it does, I know this: My physical crown of glory will be gone but my true crown of glory isn’t an object…it is in things that cannot be seen: My husband will still love me. He’ll still think I’m beautiful. He’ll still be my rock. And my children’s hearts will grow to be even more compassionate. And there is a ripple effect when that happens…it teaches others how to be accepting of people who are different from them. Because if a child can do it, surely we, as adults, can learn to be even more compassionate in living our lives.
Never Give Up,
Some things I wanted to include are simple alopecia facts.
- It is not contagious.
- Despite lots of misinformation (even my own nurse claimed this was the cause and it isn’t), it is NOT caused by stress.
- It is an autoimmune disease.
- There is no cure.
- It can happen to anyone.
- It is hereditary, but just because a parent has it doesn’t mean their children will get it–there are many genes involved that have to be ‘just so’. Here’s a great detailed informational Q&A.
And some things I learned about how to react when someone tells you they have alopecia:
- Do not tell them: It’s just hair. Trust me. We know it’s just hair. But it’s our hair. And while we know there are much worse things in this world, big, awful things that are happening to others, and we know we aren’t going to die from it– it’s still such a big deal to us because it is a disease that can cause a wide range of emotions. But we have perspective and we are thankful that we are healthy.
- Do not tell them: It could be worse. We know. And we are thankful. But depending where the person is at in their alopecia journey—at that moment it may feel like the worst thing in the world.
- Do not tell them: Just stop stressing out about it/Try not to stress. Alopecia is not caused by stress….and once you get a bald spot, sometimes you can’t help but worry about it. And when people tell you to stop stressing as if that will make it go away, all it does is make you feel like you caused it. And you didn’t.
- Do tell them: You love them. You will pray for them. You think they are beautiful. You are there for them.
- Do talk to your children about compassion. In real life situations. We all think and hope our children will be sensitive and compassionate towards others–but it starts with us: Noticing and commenting about the goodness we see in others.