by e

A Smile Big Enough to Cover the Pain | #AlopeciaAwareness | Our Daughter’s Story | #NaturalHair

A Smile Big Enough to Cover the Pain

*Though September is Alopecia Awareness Month, those who suffer hair loss, deal with it year round. A personal and passionate determination fuels our 13 year old’s desire to raise awareness. I share her story, with her permission.

While doing her hair for fifth grade picture day in November 2012, I noticed that the texture of her thick, natural hair was quickly changing. We chalked it up to possible environmental factors such as the hot, dry climate we were still adjusting to as fairly recent transplants from the East Coast. We even considered the possibility of our little girl growing up and braced ourselves for developmental changes as she drew closer to her tweens. I then began to notice alarming breakage and incredible amounts of hair shedding that wouldn’t respond to anything I tried. From whispered prayers of concern to every natural remedy I stumbled across online. I was determined to find the answer without letting her know what I saw from where I stood, comb in hand and weary.

Within a matter of days, I noticed a small round patch about the size of a nickel on one side of her scalp and another patch on the nape of her neck. I peered at her scalp completely baffled having ruled out ringworm. It happened literally, overnight. My discovery prompted a call to the pediatrician who instantly diagnosed it, “Alopecia Areata…she needs to be seen by a dermatologist”.

“Alo what?”, I said when my husband repeated the diagnosis. “Alopecia” he said. “We need to find a dermatologist”.

A dermatologist? Time is of the essence however we’re still relatively new to the region. I became consumed with searching for a dermatologist that our baby girl would feel comfortable seeing. Someone that wouldn’t echo the stares, sentiments and unwelcomed touch of those fascinated with or offended by her huge Afro.

My whispered prayers of concern quickly became unstifled cries of desperation unto the LORD and unto the LORD only. Children always take their cue from their parents, so I couldn’t let her see my fear. Soon thereafter our prayers were answered when we learned of an African-American female dermatologist who was extremely patient and compassionate. We were unaware however, that our daughter’s visit would also be the first of many that included steroid scalp injections she would endure, in an attempt to impede and hopefully eradicate the hair loss. Over time, the small patches of hair that were once the size of a nickel began to expand, one as large as the palm of my hand. It was extremely difficult and disheartening to do her hair with her crying, her scalp still sensitive from the injections. The parts in her hairstyles were uneven and her Afro lopsided, in an attempt to hide the hair loss. I remember asking God to help me know how to style her hair so that it looked nice and she wouldn’t feel self conscious. She was only 10 going on 11 and kids can be so mean. She was already dealing with being teased about her Afro and natural hair. There weren’t any classmates that looked like her…

If it wasn’t other cultures in awe and touching her hair without her permission, it was our culture launching verbal attacks such as, “You need to comb that thing”. It was very overwhelming at times….for all of us. She longed to tell her peers why she had to leave class early for monthly Dr. appointments but found out very quickly that children weren’t the best secret keepers. As a result she continued to suffer in silence, periodically pouring out her heart to God, my husband, her little brother and I.

So what is it? Alopecia is an autoimmune condition where the body’s immune system sees hair as bacteria that must be fought, resulting in aggressive hair loss. It is a non-life threatening condition that only affects a small percentage of the population. There are several types ranging from Areata (patches of hair loss) to Areata Universalis (loss of all scalp and body hair including nose hairs which acts as a barrier from pollutants). Children and adults with Areata Universalis are often mistaken as Cancer patients undergoing chemotherapy thus reinforcing the stigma and increasing the lack of awareness.

Now 13 yrs. old, our daughter recently found her voice and for the first time, has begun to talk about Alopecia to her friends within the past year. She seized the opportunity this past September during Alopecia Awareness Month to wear a blue ribbon symbolizing support. She fielded questions about her new blue accessory as it peaked the curiosity of her peers. She also sent informational texts to those closest to her, letting them know it was Alopecia Awareness Month!

In spite of being quite vocal about her cause, she found herself in a bit of quandary. Though she dealt with hair loss, she didn’t look like what she had been through. The thickness of her remaining natural hair managed to cover what she had experienced. She didn’t fit in with those who had visible patches or even suffered total hair loss; and the kids who had a full head of hair…didn’t have a clue.

Isn’t that just like us? Between our secret struggles and secret sins? Some issues and “uh-ohs” are more obvious to the naked eye than others. Someone confides in you about their marital issues not realizing your marriage has fallen apart. Another shares their woes about a wayward child having no idea that you don’t know where your child is. Then, there are those who constantly talk about their financial struggles or even ask you for money because they insist you are sitting on a gold mine. They don’t know that you’re facing eviction/foreclosure and/or repossession. Lastly you tire of those crying to you about their abortion, miscarriage or high risk pregnancy not realizing that if you could just get pregnant at least once after years of trying, you could have the same complaint. The only difference between you and them is your smile is big enough to cover the pain. So you’re surrounded by people who can’t relate or have no clue…that you can.

God looks at us all the same. Whether your smile is big enough to cover what you’re going through or you can’t muster up the energy to smile another day, GOD IS WITH YOU! God says to you, ‘I know all, I see all, you are not alone. I’m with you. Hair or no hair. Feeling invincible or invisible, it matters not. I love you. I know all about you and still want you…just as you are!

Others may not be able to handle what you’ve survived or may even be currently enduring, but God can handle it. It may not be the time to share your story, but one day you may need to, in order to set someone else free. Find your voice in Him so you can speak life and testify, to people around you. Who is it within your sphere of influence that God has assigned to your caseload? Don’t let them slip away in quiet desperation thinking no one understood their plight.

Our first born miracle (I was barren for the first four years of my marriage) has courageously helped bring awareness to Alopecia in her own way and now it’s your turn…

Be blessed beyond measure and strengthened for the journey,

e

*The National Alopecia Areata Foundation(www.naaf.org) is a great resource however be sure to consult your doctor for proper diagnosis and all medical inquiries.

© Ericka Arthur and authenticitee, 2015
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37 thoughts on “A Smile Big Enough to Cover the Pain | #AlopeciaAwareness | Our Daughter’s Story | #NaturalHair”

  3. Thank you for sharing your daughter’s story. Few people are aware of alopecia. When my son was in preschool/daycare one of his friend’s mother had alopecia. When we befriended each other, she told me that she wore a wig and lived in shame thinking everyone could tell that she wore a wig (it looked natural and I had no idea she had alopecia until she told me). She lived with painful shame that we could not see. I am thankful that she felt comfortable telling me, for I reassured her that she was a beautiful woman and a loving mother regardless of whether or not she had alopecia. When her alopecia went into remission, she took off the wig and felt incredible relief, but still lived with fear that her alopecia would strike again. I learned a great deal from her. Shame is a terrible thing. It ate away at her self esteem. I just wanted to erase that shame (it upset me to see her in such emotional pain) and replace it with the love that you so clearly understand God has for us all. God bless you and God bless your daughter for wearing her blue ribbon and educating us.

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    1. Hi Kitt! It’s always great to hear from you. Thank you so much for sharing your friend’s story. I can hear your heart & concern for her. Shame IS a terrible thing. God bless you & your family as well.

      Take care…
      e

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  5. I was very inspired by your family’s story. Your daughter is a blessed girl to have so many people there to support her on her journey. I’m so happy I came across your blog. Have a beautiful day 😀

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  14. Hello! I noticed this post after reading your 6 month celebration post. Wow. That is hard for a child to deal with. I should know, although I was in my 20s when I lost most of the hair on my scalp to alopecia. It was definitely a blow to my self image. In my case it was from an extremely stressful period in my life that can be a trigger for autoimmune diseases with the spike in cortisol. I wore a bandana for a couple of years and most people were too “polite” to ask why. I haven’t had a return of alopecia but have since been dealing with rheumatoid arthritis, another autoimmune disease. I’m impressed by your daughter’s courage in speaking up and raising awareness, especially when she could have kept a low profile and not attracted attention to it- clearly the influence of great parenting!

    On another note- I can’t believe your blog is only 6 months old! It reads like you’ve been doing this for years!

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    1. Hi and thank you so much for sharing your story! I am humbled that you would do so. Very grateful for the words of kindness and life over our first born. I also appreciate your feedback as it relates to our parenting!

      And yes only 6 months lol thank you for that! My first blog ever! It’s taken on a life of its own😌

      So glad you’re here…

      e

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