My Life with Alopecia

 

Here we go again. I tossed another handful of hair into the trash and changed my pillowcase for the third morning in a row. What’s happening to me? Why is my hair falling out? Will I lose it all?

I had compensated for months, wearing scarves as headbands. As my hairline crept behind my ears, I unfolded the scarves for wider coverage. Now it was falling out in clumps in the back as well. I’d even lost my eyebrows and the hair on my arms and legs.

Thoughts and emotions

As external signs became undeniable, so, too, were the emotions and thoughts colliding within me. I feared for my future and my children’s. Is this some dangerous disease? Will I die? Will my children be motherless?

Angry and confused, I wondered, Why is this happening to me? I can’t imagine any good coming from this! I battled self-consciousness and feared what people would think of me.

Seeking answers

I could no longer hide or deny the issue. It was time for some answers.

I visited our family doctor, a longtime family friend. “I really think you’re OK,” she reassured me. “It’s probably alopecia, but let’s do some bloodwork to be sure.” The labs confirmed her suspicion: alopecia.

A sense of dread mingled with relief.

In alopecia, an autoimmune disorder, the immune system attacks hair follicles, causing hair loss but no other symptoms. Of the three types, I had the most extensive: alopecia universalis, the loss of all body hair.

Hard decisions

As my hair loss progressed, we found hair in meals I’d cooked. My husband grew weary of dragging hair from the bathtub drain. The time for decision arrived: I could helplessly continue watching all my hair fall out, causing emotional, household, and hygiene upheaval, or I could do something.

I contacted my brother, who had been diagnosed with alopecia twenty years earlier. I explained that most of my hair was gone and asked his advice. His wisdom echoed in my ears but landed heavily on my heart, “If it’s that far gone, Sis, I’d eliminate the middle-man and finish it off.”

Changing mindset

It sounds simple, but it wasn’t. This condition was stealing my normal —probably forever. It was one thing to be a victim of something beyond my control, but active involvement demanded a different mindset.

Looking back, it was my first step toward healing.

My acknowledgment of the situation propelled me forward. While I couldn’t control this, I could control my response. Participation in the process stripped a bit of control from alopecia and returned it to me.

Taking action

Quiet tears stung my cheeks the next morning as I anticipated a call to my hairdresser. What would she say? Would she shave it? Would I cry? Would others watch this monumental event, or could she do it privately? Would she charge me for this emotional assault on my appearance?

No longer able to choke back the sobs,I called my best friend instead and explained the situation. She responded gently, “If you want to come here, I’ll do it for you.”

Beginning

I drove to her house. We made small talk while my inner battle raged. Finally, I said reluctantly, “OK, let’s get this over with.”

In the garage, she offered me a stool. She held my hand and cried while her daughter shaved my head. I watched quietly as what was left of my hair fell to the concrete below.

As my mom always says, alopecia isn’t life-threatening, but it is life-altering. Rather than the end of my alopecia experience, it was only the beginning.

Wig

My hair was gone. I needed a new strategy.

I started with chemotherapy scarves, then received a sweet phone call from my doctor — the family friend. Her staff pooled their money to buy me a wig.

A wig? I’d never pondered purchasing one.  The owner of the wig shop patiently and compassionately helped me choose a uniquely appealing style.

Adjustments

The wig served its purpose, easing me into baldness, but it was hot and itchy. Turbans and scarves seemed to proclaim “cancer,” which most people already assumed. Both options felt like a lie, as though concealing my baldness hid the real me.

I transitioned to ball caps. At first, hats were like the old American Express card: I never left home without one. One day as I walked outside to a grocery store parking lot, a gust of wind whipped my hat off and plopped it in another shopper’s cart!

Mortified, I casually reached down and said, “Oops. I think that’s mine.”

Acceptance and boldness

This incident moved me toward true acceptance. When I realized that alopecia is part of my story, I saw my daughters with fresh revelation: Because alopecia is an autoimmune condition, they could face it too. I’d prayed against that possibility, but they needed me to exemplify boldness and grace, just in case.

Over time, ball caps became less important. As bravery grew, I went hatless into banks and gas stations. Then I went au naturale for errands but still wore hats to work, church, and new environments.

Process

These days, the world gets “me,” no matter where we are — unless it’s a sunny beach or a chilly restaurant. Then I wear hats for my protection and comfort, not for others’.

For someone who struggles with self-esteem and people-pleasing, this was also a process. In time, God helped me become comfortable just being me.

I still consider what others think to avoid their unnecessary worry. My daughter bought me a shirt: “I’m not sick. I’m just bald.” It’s the perfect explanation, and I don’t even open my mouth to give it.

Unexpected encounters

My favorite part of this journey, besides increased self-confidence and better understanding of who I am in Christ, has been the unexpected encounters.

Occasionally someone starts a conversation assuming I have cancer. Most folks who ask have battled cancer personally or experienced it with a loved one. They assume I’m a kindred spirit. I listen to their stories and occasionally share some of mine because it imparts strength and courage.

Treasures in the trenches

My faith in God grew as God used alopecia to draw others to me and proclaim His goodness. One stranger in the grocery store felt safe enough to share heart-wrenching details about her family. So we prayed right there, near the checkout lanes.

A lady came out of Kohl’s one day as I entered without a hat. She locked eyes with me and asked softly, “Alopecia?”

Shocked because few people know this condition, I said, “Yep.” For one vulnerable moment, she bravely peeled back a corner of her convincing wig to reveal a bald head of her own. We talked briefly, and then she was gone. But what a privilege to be invited into her personal story, if only for a moment.

Lighter moments

While some encounters are poignant, others are just plain funny. People have an unmistakable expression when they are about to mention my hair.

An elderly bald gentleman once smiled, removed his cap, and exclaimed, “Hey, we have the same barber!” Then he put it back on and continued on his way.

My favorite comment came from a man who tapped my shoulder and said, “Um, ma’am, I don’t know how to tell you this, but. . . ” He swiped a finger across his own mostly bald head. “Your part is a little crooked.” I roared with laughter!

Truthful response

A family member once remarked, “I’m going to pray God will bring your hair back.”

My disappointment surprised me, and I answered, “Well, that’s up to you. He will if He wants it to, but I’ll sure miss some great conversations if He does.”

Truths from Scripture

God’s Word is clear: In this life, there will be struggles. They are unavoidable, but He sees them before they occur. He has overcome the world (John 16:33). When we walk through fires and floods, He promises to remain beside us (Isaiah 43:2).

Throughout my alopecia experience, God has taught me beautiful truths. I am fearfully and wonderfully made (Psalm 139:14). I am made in His image (Genesis 1:27). I am His masterpiece, created to do specific things for His glory (Ephesians 2:10).

Romans 8:28 reminds me that God causes every part of our lives to work together for the good of those who love God and are called by Him. Our trials can be stumbling blocks or steppingstones.

Mysterious plan

Pastor Steven Furtick once commented about a particularly difficult season of ministry, “I wouldn’t choose it, but I wouldn’t change it.”

That’s my opinion of alopecia. Without it, I wouldn’t be the person I’ve become. It’s God’s mysterious plan — and a blessing.