"Let yourself grieve the loss of your hair. You are losing something that has always been a part of your life. Then, reach out to others." -Amy
Please share your story:
I have had Alopecia Areata since I was 13 years old. Alopecia Areata is an autoimmune disease where a person's body rejects their hair follicles. Someone with Alopecia have spots of baldness on their scalp, others have no head hair, and others have no hair on themselves at all. Although it's not a physically harmful disease, Alopecia can be psychologically scarring.
When first diagnosed I had just 3 spots the size of quarters on the back of my scalp. My hairdresser was the one to find the spots. A trip to the dermatologist confirmed the diagnosis. At that time the doctor did steroid shots into my scalp and those spots grew back in.
In my late 20's my hair started falling out again. This time much larger spots. Eventually the back of my head was almost gone. I was perfecting the "comb down" to try to hide my balding spots. I got the steroid shots again, however, this time not all of it grew back. I found myself envying women who could wear their hair in a ponytail. It is funny, as I didn't have very long hair, but I thought "If I could just put my hair up I would look so much better". A silly thought, I know.
Until the age of 37 my hair grew partially in then fell out numerous times. There was only a circle of hair at the top of my head, which I proceeded to shave off. I chose to wear a wig as I wasn't prepared to walk around bald yet. After a month I realized that I wasn't comfortable not walking around bald. I was teaching my children to be happy with who they are and here I was covering who I was with a wig. I felt like a hypocrite. It was a Monday around 11 am when I whipped my wig off at work. I threw it on my desk and decided I was done with that wig. It is my personal choice to not wear a wig, just as it is others' personal choices to wear wigs. Neither is wrong. It has to be what is right for that individual.
One day, while waiting for my food at my local Sonic, the teenage girl who was at the carhop stopped at my window and asked if she could ask me a question. I expected the "Do you have cancer?" question. Instead she asked, "Do you have alopecia?". I told her I did, to which she replied, "I do too, and I have never met anyone else with alopecia before." This chance encounter led me on the path to start a support group through the National Alopecia Areata Foundation (NAAF) in September of 2013.
I wanted to be there for others who were not comfortable, or, those who were upset with their condition. Since I am very comfortable being bald I thought I could offer my support. What I didn't realize was how much I also needed the support group. It is so refreshing to be among a group of people who know what you are going through and have dealt with the stares and cancer questions as well as other issues that come along with losing your hair.
With the loving support of my family and friends, I am a happy, confident, bald woman. My goal now is to educate others on what Alopecia Areata is and to be available to support others who have Alopecia.
How has your story shaped you into who you are today?:
I have been hearing impaired my whole life. I am deaf in one ear and wear a hearing aid in my other ear. Growing up the hearing aides did not work with my type of deafness, so I went without them. Most people knew me as a quiet, shy kid. Often times it was simply not being able to hear people. Eventually I got a hearing aid (at the age of 32).
At this point you might be wondering how that relates to my Alopecia?!? Well, my deafness shaped much of my personality as a kid. I felt like few people understood what it was like to go through life hearing impaired. Eventually I became a bald, hearing impaired woman. Having experienced childhood with people not understanding what I was going through, all of the sudden I was thrown into adulthood with the same feelings. But, as an adult, I felt better being able to handle what life has thrown at me. I wasn't thinking of what others were going through with their Alopecia, because I felt pretty comfortable. Until the Sonic encounter, then I understood there were others out there that needed help.
Living with being bald and hearing impaired has shaped me into a person who wants to help others learn to live with what life has thrown at them. I am happy and have fantastic husband and wonderful kids, others with the same affliction can reach for the same things, if they aren't already there.
What encouraging words would you give to someone who shares a similar story? :
Let yourself grieve the loss of your hair. You are losing something that has always been a part of your life. Then, reach out to others. Don't let Alopecia be your life, it doesn't define you.
Photos by Jazi Photo
Styled by Co Chic Styling
Makeup by Jacqueline Gamache
Blush Tank c/o Milk Handmade