In honor of Alopecia Awareness month, we reached out to our Education Ambassadors and asked them to share their experiences with alopecia. We hope these anecdotes and insights will shed some light on this disease and empower those who experience it. If you have hair loss, you are not alone! Many women have had the same experience and there is a huge support network for you out there.
How did you feel when you first found out that you had Alopecia?
Sayde: “I had a lot of anxiety when it happened: wondering what was going on, determined to find a “why”, determined to find a solution, bargaining with my emotions on what I lost. I told myself all the time, “I can handle the patches as long as I don’t lose all the hair on my head.” Then when I lost all the hair on my scalp, I would tell myself, “I can handle this as long as I don’t lose my lashes or eyebrows.” And would continue to bargain a little more as I lost more and more, but eventually lost every hair on my body. It was so draining.”
Jenny: “I was diagnosed with Androgenic Alopecia at age 23, I went to the dermatologist to get help for acne and left with my world shattered. Over the years I tried everything to help regrow or slow my hair loss, but I felt utterly alone and didn’t know where to turn. I was embarrassed about my hair loss and stopped attending social events or felt a lot of anxiety when I did.”
Mirna: “When I found out I had Alopecia I was not as devastated as you would think. When I was a freshman in college my best guy friend developed Alopecia Areata. He had those small round patches that I was experiencing, just 20 years later. I thought, “I’ll hide it with colored dry shampoo and extensions. No biggie.” It wasn’t until my hair was thinning throughout and I was told I’d most like develop Alopecia Totalis and be completely bald that the shock and devastation really set in. You can imagine my horror as I developed Alopecia Universalis and lost, what felt like, my femininity when I lost all my lashes and eyebrows as well.”
Now that you have more experience with hair loss and alternative hair, what advice would you give yourself back when you were new to it?
Jen: “For so long I thought people would not accept my hair loss or my hair wearing. I tore myself apart worrying about the reactions of those who found out. I was convinced I would end up an embarrassment to my friends and family. I would definitely go back and convince myself that the only one who has EVER thought this is a big deal is me. The freedom of telling people and having them accept me has been life-changing.”
Christi: “Only the last year would I have advice for myself 20 years ago.... look into a topper! Get into a hair community! Now, Facebook didn’t exist 20 years ago, and wigs have sure come a long way since then. So, if I was talking with someone who is new to alopecia I would say: I know it feels scary, you feel alone and like you are losing yourself. But find a Facebook group for support! Find a community of women who are going through the same thing. Don’t be afraid to try a wig or topper! You will have the best hair of your life! Get a hair consultation to help you get started.”
Sayde: “Be patient with yourself but be a strong advocate for your physical, mental and emotional health. I felt like people overlooked my problem as a cosmetic issue and would reduce my illness to “It’s just hair.” I felt overlooked by my doctor who spent almost no time with me and didn’t even look at my scalp for the three appointments I made regarding my hair loss. Going back, I would have been more persistent and pushed harder for better care from my physician and mental health resources.
Jenny: “Don’t feel ashamed about your hair loss! Your friends, family, and co-workers see you as a whole person and love you for who you are. No one pays as much attention to your hair as you do. There are so many great solutions for hair loss at any stage. Do your research and try different things until you find what you are comfortable with.”
Have your feelings about your Alopecia and hair loss changed at all?
Mirna: “ABSOLUTELY. My hair loss doesn’t define me. My hair loss isn’t devastating anymore. It is my NEW NORMAL. Acceptance is key to my healing. I love my wigs. I love that I can change up my look and style as if my hair was an accessory. It’s fun and exciting.”
Jen: “Yes! I never thought I would have an Instagram account celebrating hair loss, and yes, that is how I view it! The more I have fun with it and incorporate it into my life, the more it becomes normal to not only me but everyone I know. I thought about the hair loss stigma and I told myself that I could be part of the problem or part of the solution, and the choice was obvious. It went from my deepest insecurity to a platform for me to build relationships, normalize hair wearing, help others, and educate.”
Christi: “Yes, I think because I’ve had it so long (20 years) and tried shots, creams, pills, and nothing ever worked... I even stopped doing anything for the spots for a long time till my hair got super thin, then I found the hair community! Now I feel on top of the world! Because I have alopecia... I CAN NOW HAVE THE BEST HAIR OF MY LIFE! If I want to be a redhead? I CAN! If I want to be a Brunette? I CAN! If I want to be a blonde? I CAN! I don’t let it hold me back anymore but take me further.”