Living with alopecia is a different experience for everyone. Each stage and transition in life is made difficult by a unique set of challenges. Along with an ever-changing appearance, alopecia carries with it a wide array of emotions. While the experience of living with alopecia is personal, the emotional toll that accompanies it can be similar for many of us. 

Common emotions associated with living with alopecia 

1. Anger

2. Shame

3. Depression

4. Loneliness

5. Embarrassment 

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Alopecia made me feel embarrassed in my skin. Along with feelings of embarrassment, I struggled with conflicted feelings of anger. I didn’t ask for alopecia. I didn't ask to be jeered at or ridiculed. It infuriated me that people couldn't be empathetic about something I have no control over. What upset me most was that instead of asking for clarity or more information about my hair, or lack thereof, people resorted to snide remarks about how they would never get a haircut from my mom. Or they made jokes about how my appearance was ugly and funny looking. I would internalize those words and began to own them as my identity. I often thought the voices were right. My hair was weird looking. I was ugly. 

I was angry at myself, angry at my hair, and angry that I couldn't control my situation.   

The anger I felt disguised my helplessness and fear. I was in survival mode. Each day I was terrified someone would comment on my appearance. I felt like my only choice was to cut it short and do my best to hide. I made myself small to escape the stares of others. 

Until there is a cure, my hair falls out naturally as leaves fall from trees. Yet no one laughs at the tree when it has bare branches the way they laughed at me.

Until there is a cure, my hair falls out as naturally as the seas change. Yet, no one whispers about the constant shifting waves the way they whispered about me. 

Until there is a cure, my hair falls out as naturally as the clouds pass through the sky. Yet, no one snickers about the ever-changing shapes of the clouds the way they snickered about me. 

All things in nature constantly evolve and people look at that change with awe, beauty, and reverence. Why did my dynamic appearance bring out the nastier side of people? 

 The sea without its waves is still revered. The beauty of the sky is still celebrated without clouds. The tree still stands tall without its leaves. 

Feel Your Feelings

It's okay to be angry. It's okay to feel your feelings. It's a privilege to experience all the grief, anger, and joy that life has to offer. 

The comments that were hurled at me opened my eyes to how often ignorant people are the loudest and how easy it is to let the words and actions of others drown out your own voice. 

The anger I felt was an indicator of the injustice I felt when people made me feel uncomfortable. From that anger, I learned empathy for myself and others by questioning the source of my anger. How did I wish others approached my appearance? How did I see myself with alopecia? Do looks matter as much as people made me feel like they did? 

People will have their opinions. Their opinions shouldn't dominate your narrative. In situations where I have little control, I can control my response. I can control my mindset. I can choose peace.

When we reflect, we learn from our experiences. We identify what was positive (or negative), and allow that information to guide us, improving our future well-being. With that knowledge, we can step out of the patterns that negatively impact our ability to live freely and honestly. We can stop letting others tell us how to look and feel. 

My "worry about yourself" Mentality

"Worry about yourself," is a powerful phrase I use when I need to feel grounded. Remembering this prevents me from drowning in negative emotions, like anger. In moments of overthinking this mentality is a reminder to treat yourself as a friend, refuse to let others tell you who are you, and most importantly, make yourself a priority. 

Whether you go bald, buzzed, or wear a new wig every week. Whether you cover up or show off, don't make your choice out of fear or shame. Choose because you love you. Choose because you love how you look. Choose the version of you that brings you peace.

Dealing with Anger

In elementary school, I learned the hard lesson that people are cruel to things they don't understand.

One day when riding the bus home from school a kid kept pulling off my winter hat so he and his friends could laugh at my head and the bald patches that dotted it. My skin flushed red hot from the embarrassment and anger I was suppressing. 

I tried to react quickly, grab it, pull it back over my ears. Only to have it snatched off again. And again. And again. And again. And again. I couldn't stand up because I knew I'd break down. I couldn't open my mouth cause I knew I'd cry. I even tried to laugh it off with some broken smile as if I was in on their joke. I always recalled this memory with a lot of resentment. I had never felt so incredibly small. 

Every day my mom asked how was school when we came home. That day I couldn't answer her. Instead, every tear I had held back rushed forward. She could see underneath everything to all the broken pieces from that bus ride home. I don't remember telling her the boy's name. I don't remember when she called the principal. But the next day he was suspended and I knew my mom had taken a stand for me.

It hurts to think back to this and I have a lump in my throat writing all of this. But for all those with alopecia, know you're not alone. The actions of others don't define you. After this event, I felt belittled. I felt dehumanized. I felt like I was nothing more than my condition. I felt like my identity was being attacked. The anxiety of this experience would silence me for years. I was too afraid to talk about my experiences with alopecia, unable to share my story, and advocate for myself. 

Today I have a better sense of self. The more I reflect and write about my past experiences the more I process and learn from them. I can freely share my story with others and welcome conversations that allow me to grow as an individual. Even if the situation was the same, my mindset today would be different. No matter who jeered at me, it wouldn't change how I feel about who I am. The stares of others would not shake the self-love and confidence I have in myself. 

Follow my journey on Instagram @beanie_OG