This Is My Story Of Having Alopecia And Alopecia Not Having Me

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Hair Loss Journey

“‘Hair doesn’t define me. It’s my character and integrity that does.’

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Going from long black hair to none at all. It was around the year 2000 (I was 30 years old) when my hair loss journey began. I can remember one day standing at my mirror combing my hair and that’s when I noticed more hair strands than normal in my comb. At first, I did not think anything of it. After a couple of months had passed, I remember a spot in the middle of my head that caused me to become alarmed. I tried treating my hair myself, but that was a failure. My hair was getting worse and so were my nerves.

One morning I decided to call my PCP and discuss my hair loss. I was diagnosed with alopecia. What is alopecia you ask? Alopecia is an autoimmune disease where the body’s immune system attacks hair follicles. Some people have thinning hair, patchy spots, and just no hair at all (bald-headed). To put it in a more plain way, it is hair loss. Once I was diagnosed, my hair treatment began. I tried different hair ointments, gels, pills, and head injections (steroid injects) but nothing helped. While I was trying different treatments and medications, my hair continued to come out and I became very afraid. My hair loss became so bad I had to rely on wigs and hair weaves.

Life With Alopecia

Living with alopecia, I became depressed, emotional, embarrassed, and ashamed. My self-esteem was very low and I didn’t feel pretty at all. I would stand in the mirror and give myself pep talks just to start my day. I hid my feelings behind my smile. I didn’t tell anyone my secret, but one day I decided to talk about it. In my conversation with certain people, they would always say, ‘It will be alright.’ NO! IT WILL NOT! That is what I would say in my mind. You have hair and I DON’T!

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Telling My Story

For 22 years I had been dealing with my secret (alopecia). The Lord had also been dealing with me as well. The Lord had been speaking to me to tell my story. Back in March of this year (2022), I told my story through Facebook. After that, I did feel some relief. I received a lot of love and inbox messages from women who hid the same secret as I did. I still did not feel free. I still felt like I was in bondage. I heard the Lord say, ‘Pictures’ one night. Now Lord, I know you got jokes (smile). So, you know what came next? An alopecia photoshoot.

Once my pictures were available, I did hold them for a couple of days before releasing them out for the world (Facebook, Instagram, TikTok, etc.) to see. I prayed for strength and posted the first picture on all of my social media platforms. My phone began to go crazy with all of the likes, hearts, messages, congratulations, praises, and thank you’s from both women and men. I have received messages both private and publicly from individuals I didn’t even know. I received an outpour of ‘THANK YOU’s’ for giving them the courage to discuss and show their spouses/family members their alopecia story. This is what I would tell my new alopecia family, ‘It’s not me, it is the Lord using me to get awareness out about alopecia, but also for his Glory.’ I have had a tremendous response since coming out of hiding.

Since I have come out of hiding, I no longer wear wigs or hair weaves (my secret is out). I am showing my truth which is my bald head. I have been receiving nothing but positive vibes. I have been told I am beautiful with or without hair. My family and friends have been so supportive. The only thing is, I have to explain to people I do not have cancer. I have alopecia.

woman with alopecia in a vibrant orange dress
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Alopecia Advice

If I had a chance to speak to anyone with alopecia, especially women. I would tell them:

  1. Love yourself regardless.
  2. You were made special by the creator.
  3. You are BEAUTIFUL.
  4. Look in the mirror and speak life.
  5. No one can tell you how to feel if they have not walked in your ALOPECIA shoes.
  6. It’s okay to feel angry or sad, but it’s not okay to stay in that space.
  7. Don’t let anyone rush you to come out. You will know when to show your TRUTH.
  8. ALWAYS remember God LOVES you and you did not do anything wrong.
  9. Hold your head up and walk as you OWN it.
  10. I know I have said this before: ‘YOU ARE BEAUTIFUL.’
  11. Talk to someone with alopecia.

This was not an easy task for me to share with the world (my hiding TRUTH), but it had to be done. I believe wholeheartedly, it was one of the best decisions I have made. I feel like coming out and speaking about my alopecia has helped a lot of women. There are a lot of women walking around in shame because of this condition. Not only women, children as well. Some of these women/children are being bullied daily. If I could speak to the bullies, I would tell them, ‘Put yourself in their shoes.’ What if it was someone in your family (mother, father, sister, brother, or your child) with this condition? Would you bully or harass them?

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This is my story of me having alopecia and alopecia not having me. This is my ‘TRUTH!’ Coming out of hiding is the best thing I could have done. I no longer have to wear wigs/hair weaves because I have to. I can wear wigs/ hair weaves because I want to. I let my TRUTH SHINE through my bald head.”

woman with alopecia standing on a couch
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This story was submitted to Love What Matters by Sondra Jones-Brown. You can follow her journey on Facebook, Instagram, and TikTok. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this here:

‘I hid behind my mom the 1st day of kindergarten, afraid to walk into a room of kids who did not yet know I was different.’: Woman with alopecia shares self-love journey, ‘I show up for myself’

‘If I don’t act now, something much worse will happen.’ I locked myself in the bathroom and shaved my head.’: Woman with alopecia says ‘I feel beautiful’

‘A car of teenage boys drove past and yelled out, ‘Ugly!’ I was embarrassed and felt HIDEOUS.’: Young woman battles alopecia, ‘I’ve become a glass half-full kind of girl’

‘Oh my God! There’s another one here!’ I thought she was just mocking me. I couldn’t stop thinking about it.’: Single teen mom raises awareness about alopecia, ‘You are not alone’

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