Learning to Love

By: Stephanie McDaniel

Stephanie's family

While vacationing with my family, I had just finished my turn in the hotel bathroom when my daughter, who had come in right after me, started yelling for me to come over. Upon entering, I saw the panic in her eyes as she stood and pointed at all of my hair on the floor. Embarrassed, I started to gather up my hair, as if it was part of the mess I had left behind. That’s when I realized this wasn’t your ‘normal’ hair shedding. 

I am 47 years old, and never in my life have I experienced something like this, nor did I have any warning I would experience this as none of my relatives had it. 

On April 1st, hoping it was just an April Fool's joke, I was diagnosed with Alopecia Areata Totalis. By Mother’s Day, I had fully transitioned into a wig. Then by the beginning of June, I realized all of my nose and ear hairs were gone, followed by my eyebrows and eyelashes. Hair from all over my body was gone. My diagnosis then became Alopecia Areata Universalis. 

The crazy part about all of this is how fast it happened. I had no advance warning to prepare for this. At first, I found myself trying to race to save my hair, as I tried to get in to see as many doctors as I possibly could. I tried supplements and Rogaine. I even started washing my hair with Mane ‘n Tail, a horse shampoo which someone recommended would help thicken my fast thinning hair. Each day I would gather up all of the strands of hair that would fall out, save them in a Ziploc bag and date it. I was desperate, but then as more time passed with no answers, I realized the inevitable. Eventually, I would have no hair left on my body. I wasn’t prepared for this physically or psychologically. I found myself all alone to figure out things I had no clue about, such as where to buy wigs or what type of wigs to buy. All this decision making was emotionally taxing. I turned to my family and friends for help. 

Most of the time, I found myself wondering if there was an inflammation in my body that was causing my immune system to turn on my own hair follicles like that. That is a question I am finding no one can answer. After 47 years of life, why is this happening now? I have spent the last few months dealing with feelings of depression, anger, shame, embarrassment, and not knowing what the day was going to bring.

 

Stephanie Smiling

 

Through it all I have tried to look at the blessings in my life. I may look like I have cancer, but I am extremely blessed that I don’t. I am extremely blessed that I have a husband that loves me unconditionally and continues to smother me with love, making me feel just like the day I married him. I am extremely blessed to have three teenage kids that don’t seem to ever bat an eyelash, whether I am wearing a wig, or nothing at all. They all still give me a kiss and hug every night saying how much they love me. 

Above all, I am learning firsthand what I have always taught my kids: “What matters is what is on the inside, and not what is on the outside.” I see my kids, and my husband, living by this every day, but I am not. I am struggling with this. I am having a hard time loving who I am on the outside. It doesn’t get easier to look in the mirror every morning when I wake up, realize I am still bald, and that it wasn’t just a bad dream. Slowly but surely, I am learning to love my new normal but it is hard, and I am learning that that is ok. 

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