Tell me a little bit about yourself and your family now?
I am 41 years old and am married to my husband Jason. We’ve been married almost 16 years and have five children (ages 14, 12, 11, 7, and 5). We live in Texas.
Glad to be interviewing you today, all the way from Texas! Explain to my readers a little bit about what alopecia is and when that began for you?
When I was fourteen, I was getting a hair cut one time and my sister found a little bald patch… it was completely smooth… I was curious about it but didn’t know what it was. When my dad saw it, he knew what it was: alopecia. Alopecia is an autoimmune disorder where your immune system mistakenly attacks your hair follicles, or the place where hair growth begins. It’s a disorder where traditional medicine doesn’t have a lot of answers as to why our body decides to attack itself.
So as a young teenager, I got put on steroid injections in my scalp to see if that would help. It would help for a while, and my hair would grow back, but then I’d get a few more bald patches, and would go back in for injections. This continued for many years, and most people didn’t even know I struggled with hair loss at all. A few years later it started getting worse. I remember one day at the doctors counting 121 injections, and as I felt each one go into my scalp, I thought, That’s enough. I then went on oral steroids, and instead of taking it for a little while and then tapering the medicine like it’s meant to be, the doctors were having me take it consistently; every day for several years. This caused me a lot of really bad health problems. By the time I was 23, I decided I was done taking Prednisone, because it was wreaking such havoc on my health. It was messing with my hormones. It was messing with my menstrual cycle (which ended up going away), and many doctors said I wouldn’t be able to have kids. So I went off the medication, and started seeking other forms of alternative healing to help with my autoimmune issues.
Hair is something that is known to be a “womanly characteristic”. It’s something that many people are defined by. You are so confident now, but in the beginning, how did you deal with your hair loss?
I was terrified. I was just really horrified by it. My parents paid to have an extremely expensive wig bought for me. I even went in and had a mold of my head made, and the wig was really beautiful human hair. In the beginning, I wore wigs most of the time. When I didn’t, I had a really hard time looking at myself. I had really long, dark, pretty hair before, and it was a feature that I was often complimented on. You know, we start to define ourselves by these physical things. So it was difficult to even look at myself in the mirror.
I’ve told this story a few times, but I think it makes the point: In my parent’s house, in the kitchen, there are these tall, floor-to-ceiling windows, and then it goes out onto a back deck. One night I walked out, and the drapes were open, and I saw this tall, bald man standing out on our deck. I screamed. And then, I realized it was my own reflection. I remember thinking, If I can’t even recognize my own reflection, then something needs to change about the way I am seeing myself.
When did things start changing for you?
You know, things really started to change when I started getting involved with some support groups. When I first had alopecia, the Internet didn’t even exist. Facebook groups weren’t around yet. But now, I feel blessed to have gotten in touch with other women who are experiencing it as well.
I also feel blessed for where I’ve gotten to emotionally because I know of a lot of women who don’t feel emotionally okay with it. I know of one gal who has said her husband has never seen her without her wig on. I knew that when I got married and lost my hair for the second time, I didn’t want to hide like that. I wanted to do what I wanted to do. I certainly don’t judge people who want to wear wigs, or whatever people need to do to make them feel the most comfortable, but I didn’t want to wear a wig most of the time. It was hot and uncomfortable, and I felt like I wasn’t myself. I still do occasionally wear wigs, like to church, or after I had lost my hair when I was working as a court interpreter. But I am comfortable with who I am. I’m also almost 6 feet tall, and so I already stand out. So sometimes I still wear it. Sometimes you just want to blend in.
It’s interesting because we all have those negative thoughts about ourselves every once in a while, wishing something about us was “this way” or “that.” For other women out there who are struggling with body image, what would you tell them?
For me, it’s hard to talk about this without going to a spiritual place. I just had to learn that darkness begets darkness and light begets light. Every thought that we have affects our physical body in some way. Positive thoughts make us healthier, and negative thoughts make us unhealthier. Beauty is often portrayed through media as having to look a certain way. But having lost my hair, living in a more diverse place, and going to Haiti and seeing things, my eyes have opened in a different way. As negative thoughts come to me, I redirect them and turn them into thoughts of light and goodness. There’s not one definition of beauty. It is such a broad thing, and people with all different shapes and sizes and looks can be very beautiful people. It’s more about the aura and light coming out from them, and the way you feel around them, that makes them beautiful.
As a mother, I start to think about how I speak to my three daughters, or how I want them to speak to themselves, (and men struggle with all these things too). But for some reason we as women are so critical of ourselves from such a young age, with every imperfection, or things we “see” as an imperfection. And with my daughters, I look at them and think, Oh my goodness. They’re just perfect. There’s nothing they need to change. They are divine children of God, and they are a gift. I would never want them to say anything mean or unkind of themselves. And we’re taught that way; to never say unkind things to people. But for some reason, we as women have come to accept and think it’s okay to say really cruel, negative, and unkind things about ourselves. What I’ve come to realize, is that if it’s not okay for me to say something to one of my own daughters, (or on a broader scale say to any of God’s children), than it’s not okay to look into the mirror and say things that bring darkness and negativity to myself.
What beautiful words. Thank you so much for sharing that. I have had similar thoughts running through my mind lately; that we’re all unfinished, working to be better, and that “beauty is in the eye of the beholder.”
Can I just share a quick story? The first time I went to Haiti as a representative for Haitian Roots (a non-profit Shannon set up with her husband to help educate impoverished Haitian kids), we went to meet our first group of kids that we put in the scholarship program. I didn’t have hair at the time, and was wearing a scarf around my head. I had to go out to one of the orphanages, and saw a little boy that was in the process of adoption. This little boy had no hair, no eyebrows, no eyelashes, no hair on his head… nothing. I immediately thought, This little guy has alopecia!
He wouldn’t stop staring at me. Many of those kids had never seen a white person before, and so we got a lot of stares. At that time I still felt really naked and self-conscious without something around my head. But I sat down next to this boy, and took off my bandana. He just stared at my head and he touched it with his hand. And then I reached out and I touched his head. It was the most beautiful experience and it was something that really helped and strengthened me in a time where I had many dark thoughts about myself. It was such a tender moment, and something was born into my heart… we are beautiful the way we are. I didn’t need long hair. I didn’t need anything.
