Bald and Beautiful

So there’s been something on my heart recently, but I’ve been hesitant to share it for a variety of reasons. Mainly because I’ve been frustrated. And generally when I’m frustrated, I tend to say unkind things and offend people. 

And in my frustration about this situation, I’m going to try not to offend or hurt anyone. But this is something that I’ve heard a lot and I’m tired of being quiet about it.

For those of you who may not know about my struggle with alopecia, this blog post will give you some background on it, so go read it first before you finish this one.

 http://myinterruptedplans.blogspot.com/2014_02_01_archive.html

So a comment that I’ve heard all my life and the one that precipitated this post is, “Alopecia is not a life-threatening disease.”

True, you will not die from alopecia. But it does threaten your life. It attacks hair, which many studies have shown is a basic part of a woman’s identity, whether she admits it or not. 

Alopecia is life-threatening. It attacks you. It attacks your soul, your mind. It can emotionally, psychologically, spiritually overwhelm you.

It lies to you. It tells you that you aren't beautiful, that no one will ever think you're beautiful, that you can never have a normal life, that you are unclean, sick, not worth looking at.

And these are all lies I have believed and have to fight against every day. And it's only by Father's grace that I have not succumbed to these lies and ended it.

Every day, I wake up, I look in the mirror, and the first thing I see is the alopecia. For 21+ years this has been my life. And the question always is, "How am I going to hide it today?”

I want a voice for patients with alopecia. I want people who have this disease (and who are going through it alone like I did for a very long time) to have a safe place to turn to, to have support. And I wish that when I was young I would have sought out the few organizations that do support alopecia patients. But I was young and stubborn and did not listen to my parents who encouraged me to seek help. I thought I could just get through it on my own. 

But that’s not true.

Like with most things, you get support from community. From sharing your story and hearing other people’s stories. 

I’ve shared my alopecia story twice now … once in China and once in Haiti. 

It’s powerful to see what vulnerability can bring. In Haiti, I literally broke down in tears sharing about my alopecia with the women there. I cried because it was difficult to talk about it and also because my Dad was sitting in the back watching me speak. 

I think my alopecia has affected my parents more than it’s affected me. They had to watch me lose all my hair when I was 2. They had to take me to the doctor and hear the best physicians say, “There is no cure.” They have had to watch me struggle with this disease, knowing that there’s nothing anyone can do. They’ve had to come to my defense when people would say insensitive comments or when other children would make fun of me. They’ve sat quietly while I’ve screamed terrible things at them because of my anger and frustration. And they have done everything in their power to make me feel beautiful. 

To be honest, my alopecia is what drove me to medicine. I think my thought process was, “Well if I can’t fix my own disease, maybe I can help someone fix theirs.” Whether or not that was a good motive, I don’t know. But it started this whole process of getting me where I am now. 

I’m rambling now, but I guess what I really want is for people to know what this disease means. I want people to understand that when you complain of a bad hair day, there might be someone listening who has no hair of their own. And it hurts to hear that. 

It hurts when people say alopecia isn’t life-threatening. Because while it may not be the thing that ultimately ends my life here on this earth, it threatens my life. 

The glorious part of this is that I don’t have to worry about what people think of how I look. Granted, I still do because I’m human and a sinner. But Father sees me as beautiful. He doesn’t see the bald spots. He doesn’t see the acne. He doesn't see weight. Or the crooked nose, or crooked back, or the dark circles under your eyes. He sees you. He sees me. 

And He thinks we’re beautiful. 

Sharing my alopecia story at Taiyuan Teens