I shared in this space a couple of years ago, about our then 10 yr old daughter’s battle with sudden hair loss as a result of Alopecia. Blue is the awareness color for the condition and our daughter; now a 15 yr old HS student, shares her story every chance she gets.
She’s courageous. Courageous because no one would ever have to know. See she was diagnosed with Alopecia Areata where there are patches of hair loss. Her remaining hair is thick so depending on the hairstyle, bald spots can be hidden. But now she’s getting older and experimenting with different hairstyles so newly formed bald spots are visible. As a creative being, she’s discovered that blue lipgloss and strategically painting only one nail blue; sparks a conversation she’s ready to have.
I never shared photos of the bald spots on her scalp. Not only because they were the size of the palm of my hand, it was just too overwhelming to do so. The hair loss…it seemed to happen overnight.
LIFE BEFORE ALOPECIA AREATA…
It’s been difficult when I watch her struggling with her hair. I want to jump in and help her figure out the parts; literally and figuratively – but I would be doing her a disservice at this stage of her development. She talks about going away to college one day and wanting to “feel comfortable doing her hair without Mommy’s help”. As a parent however, it’s painful to watch her sweep up piles of hair after washing or combing it. But even with that going on behind closed doors, she still has a full head of hair. This has served as a tempting deterrent to be silent and understandably so. Either classmates did not understand because they couldn’t see her condition and the monthly scalp injections; or she had serious tinges of survivors guilt about the hair she did have. After all we are taught to not judge books by their cover…but we all have at one time or another, wouldn’t you say?
As a matter of fact, I came across an article years ago written by Ohio journalist Jona Ison raising awareness about her son’s Alopecia Universalis. She said strangers would pay for her son’s meal at restaurants because they assumed he was a cancer patient undergoing chemotherapy. Attempting to seize those moments as teaching opportunities to educate others often ended in frustration. Kind strangers mistook her response as a modest refusal of their generosity and wouldn’t hear another word.
I remember reaching out to her back then because it was all so new for us and she was extremely gracious. I credit Jona’s bold transparency coupled with God’s undergirding, in empowering me to do the same.
Listen. We all have something.
To this day, I’m accused of lazily slouching and having horrible posture. The accusation of having horrible posture is correct, but the reason is scoliosis; something else God decided that I should genetically pass a hint of to our daughter as well!😉
Though she is determined to help raise awareness, there are those who will never see her as a person dealing with hair loss or qualified to discuss it. Those who in their smug haste would ignorantly deem our determination to raise awareness as a cry for unmerited pity. But we are not alone. Afterall, there are those who will never see you as a person dealing with any type of loss…simply because of how well you wear your survival too.
Would you consider sharing this post? There are several ways to do it just by clicking the various social media icons below. Maybe we can help someone else today who may think they’re the only one dealing with invisible loss.
Little do they know….
I wear blue for our daughter. You can find her story in the piece shared with her permission called “A Smile Big Enough To Cover The Pain“. To connect with the National Alopecia Areata Foundation visit http://www.naaf.org.
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Photo Credits – Ericka Arthur