Losing My Hair: I Am Not Okay!

How long can I pretend? It is okay to not be okay. For so long I have been a strong daughter, sister, and friend. How do I tell all these people that I am not okay. I push myself to be okay. I don’t even know how to move in this space. I am sad, hurt, angry, and in disbelief all at the same time. I am still trying to process the words, “Your biopsy confirmed that you have Central Centrifugal Cicatricial Alopecia.”

My dermatologist was kind and discussed a plan for treatment

I am not sure if I fully heard the treatment plan. All I could play over and over was that I have alopecia. Are you telling me that I am losing my hair? Yes, that is what my dermatologist was telling. Maybe not in those exact words, but that is what my mind heard. Not just my mind, my heart. But I keep telling myself, I am okay. This will be okay.

When I initially had my appointment with my dermatologist, we were not sure if it was an alopecia that would grow back with Rogaine treatment and that was an option, but she wanted to wait until the biopsy came back before we started treatment. I said I understood and went home with so many questions, but mostly a sad feeling. Waiting for a test result to come back is so difficult.

Any other time, life moves fast--but not this time

Days turned into weeks, and I was getting anxious. While I was waiting for the results, I noticed my hair continuing to shed. I made an appointment with my hair stylist, and she confirmed that my hair was continuing to fall out and we will have to cut it some more and she told me about a product that will cover the thinning spots.

I went and purchased all the things she told me to get. I stood in the mirror and cried. This can’t be my life. I heard myself say “It’s just hair, it will grow back.” I said so many times when I would try all these new hair styles and hair colors. In that moment, I realized it was not just hair and it was not growing back.

This can't be happening to me

On September 30, 2025, it was confirmed that I have Central Centrifugal Cicatricial Alopecia (CCCA). It was like they were speaking in a different language. This can’t be happening to me. I can’t believe this. The thoughts of sadness, frustration, and anger came through like a flood. I AM NOT OKAY!

Everyone would say, “you are still beautiful, it’s just hair, you can wear a wig, at least you have the head shape for bald.” I know everyone was trying to make me feel better, but it didn’t. I did not feel beautiful, and I did not care that I had a great head shape. I don’t want to be bald, and I did not want to wear a wig. It is not just hair, it is MY hair, and I am losing it. I had no control over any of this.

Not only am I losing my hair, but I am losing me

I cried from September 30th until now. I am slowly coming around, but it is taking time. I was able to connect to a support group, and I found a way to express myself through posting about how I feel. I am learning to embrace wearing wigs, but it is still something I am getting used to.

You don't realize how important your hair is to you

I had to cut all my hair off, and looking in the mirror still stops me in my tracks. I stare at the person in the mirror, but I don’t know who she is right now. Having someone to talk to has been a great help. You don’t realize how important your hair is to you.

When you are going out with friends, going out on a date, running errands, going to work, or just simply sitting around the house, you stop and look in the mirror and say, “how am I going to do my hair today?” Now, I just look in the mirror and decide if I am going to wear a wig or a hat. It doesn’t matter which one I choose, I am still trying to be okay in a not okay space.