Photo credit: Diantha French
It’s our pleasure to present August’s Glisten Girl of the Month, Mrs. Jaclyn Nebeker. As the captain of the water polo team in high school, Jaci has always been a natural born leader who was able to handle the toughest of challenges. However, her strength was put to the test during college when she began losing her hair for no apparent reason. Soon after, she was diagnosed with an autoimmune disease known as Alopecia. With the support of her family and friends, she not only learned to cope with her diagnosis but was able to learn to accept herself as wonderful, good, and complete. Whether you have alopecia, a different autoimmune disease or are just in need of an empowering story, you will be able to relate to Jaci and be moved by her journey. Read Jaci’s interview to see how her diagnosis helped her to realize her true strength and beauty.
What is alopecia and what type do you have?
Alopecia is an autoimmune disorder. This particular disorder mistakes your body’s hair follicles as foreign and attacks them causing your hair to fall out. There are 3 different types: areata (spotty), totalis (whole head), and universalis (whole body). I have areata.
Describe the moment you knew something was up-what was the biggest red flag?
The moment I knew something was up was when I was doing my hair and I found one quarter sized spot. I freaked out and texted the picture to every doctor or medical student I know. At first I felt like “Oh well, it’s not noticeable and not a big deal.” I didn’t even worry about it. The biggest red flag was when more spots started showing up on other parts of my scalp.
Does alopecia run in your family or were you completely surprised by your diagnosis?
Alopecia does not run in my family and I was completely surprised. It was really frustrating because it seemed like there was no explanation, no reason at all that this would happen.
What were/are your treatment options?
Treatment options are very traditional as far as western medicine is concerned. Steroids were an options but they had side effects like leaving divets in your scalp! And steroid creams were an option and I used it for a while and saw no progress. The doctors basically identified it and said they only know how it happens- not why. It is an incredible unknown illness as far as a cure is concerned.
Did you alter your lifestyle in any way to deal with your diagnosis?
I started taking more bubble baths! The doctors suggested that stress might be a cause, but probably only one part of the puzzle. I had a really rewarding, but incredibly emotionally taxing job. I worked with adolescents struggling with emotional disorders and family issues. I decided to make a change within the company and work in a different position where I could have a break from the emotional stress.
I was surrounded by my family and felt more empowered than I ever have. More empowered than any success I have ever had before.
How did your friends and family respond to your hair loss?
My friends and family have been so supportive. When I first decided to take control and be in charge of my hair loss I shaved my head- literally with a razor blade! My husband, who has been my rock and confidant through all of this, shaved his head with me. I was surrounded by my family and felt more empowered than I ever have. More empowered than any success I have ever had before. During the time I was bald I wore wigs, headdresses, and sometimes even went au natural. I was a bridesmaid, I had family photos taken, I graduated from college- all while bald.
What is the meanest thing someone has said to you?
Once, a student that I worked with was angry with me while at work (typical- that sums up my job in a nutshell) and told me I was faking being sick. That hit me hard, even though it shouldn’t have- it came with the territory. But standing there without hair, trying so hard to keep it together, I have never felt more like giving up.
Who was the most supportive and how did they help you cope?
My husband, Matt, by far has been the most supportive of me during this whole experience. In my family there is a running joke “I’ll love you even if all your hair falls out”. My husband even said it to me on our wedding day. Well, mine did and he still does. He tells me, “after that, there’s nothing we can’t beat together.” When ever I feel depression and longing for my hair, Matt is always quick to hold me close, remind me that I’m beautiful, and tell me everything is going to be okay.
How do you think having Alopecia has benefited your life?
Having Alopecia has brought awareness to my life like I’ve never known. Many people assumed I had cancer and would tell me their stories. That was powerful to be able to connect with them in that way. Additionally, I have learned so much about accepting ourselves as “good enough”. Most of my life I saw the term “good enough” as an excuse to do less than your best. Continuing through this entire journey has helped me to learn the I am good enough as I am and that it’s not second best. Who I am today is wonderful, good, and complete. I have learned about being whole and complete instead of to be perfect or without flaw.
What is your weekly hair regimen?
My weekly hair regimen is to wash it. When I had no hair I would wash my head with a shampoo that had lavender oil in it. I am not sure if it helped at all but it made my scalp tingle. That was pleasant.
Do you follow a workout routine?
My work out routine is best described as I need to do more of it. Ha!
Did you change your eating habits after you were diagnosed?
I changed my eating habits to try and focus on healthy, nutrient dense foods. I ate a lot more salads than I ever had before. Changing my eating habits was an attempt to also combat the fatigue I felt which was a side effect of the autoimmune piece.
Did changing the way you eat help to improve your symptoms?
Focusing on energy packed food really helped me feel better and more energized. I could tell a difference between drinking caffeine to help myself feel awake and eating an orange or protein packed nutrition bar.
What is your favorite healthy meal or snack to make?
My favorite healthy meal to eat is a large chopped salad. I really got into salads and greens during this time period. So spinach and kale salad with cranberries, almonds, poppy seed dressing and salmon. Throwing in some strawberries or blueberries really make my lips pucker!
What food do you splurge on?
I splurge on McDonalds french fries – honest. I love it and feel so guilty after. Not good for my body at all!
Do you have a favorite quote or mantra?
“God made only a few good heads in this world and the rest he covered with hair.” – Grandpa Nebeker
What song/artist gives you strength/makes you feel powerful?
Colbie Cailait really inspired me through this whole process. “You Don’t Have to Try” was my power song through all of this. Also, I listened to a lot of meditation music, which has no particular artist, but really helped me feel peace in the moments of stress and self-doubt.
What advice do you have for other people who have alopecia?
My advice for others with Alopecia is to embrace/accept yourself and find peace.
Answer this: I am happiest when…
I am happiest when I am camping with my boys: Matt and Apollo
Photo credit: Diantha French
Thanks for sharing your journey with us, Jaci. You are an amazingly beautiful, strong and courageous woman.
XO, The Glisten Girls