A Visible Secret: Living With Alopecia, Choosing Myself
A Visible Secret
I am living with a secret—visible but unknown. Here is a personal story.
I have lived with this secret since I was a teenager. It began at a tender age when I was a very shy and quiet child, observant and thinking. Pondering and asking questions. We arrived in Sweden in 1984 when I was 10 years old. Classmates admired my beautiful, thick black hair. Adults and children were amazed by it. I didn’t care much; I just noticed. ‚
I barely looked in the mirror or thought about my appearance. I didn’t use makeup or earrings—only a few times. I didn’t dress very feminine either; I was more of a tomboy. I preferred comfortable clothes and tomboyish apparel, and shoes that were not very girly.
Around the age of 14, I started losing hair. My scalp was very itchy. I would sit and scratch and scratch, and I would see hair falling on the table—especially in the evenings and at night when I was reading and doing homework. In the first couple of years, I lost a lot of hair. It became visible and disturbing.
At 16, I shaved my head for the first time. My aunt helped me cut it. It took a few hours to slowly cut the hair and finally shave it. In the first couple of months I had a lot of bumps and bleeding—wounds from the scratching, or whatever infection I had on my scalp. There she was, my aunt, helping me through it.
Shaving was a remedy. It helped. It stopped the itching and the hair loss. Still, I felt very sensitive because of how people viewed me, and I was still very quiet and shy. After a while I let the hair grow, and then I shaved it again.
A few times later—between 16 and 22—I decided to keep it permanently short. At 22 I began shaving it once a week. This became my new hairstyle and identity. It helped me feel good about myself. I also started losing weight.
I went to see a doctor about my hair. The first doctor thought it was a teenage stress problem and couldn’t find any issue. Twelve years later, in Switzerland, I saw another doctor who also misdiagnosed me. Finally, another doctor in Switzerland identified it as alopecia and hereditary hair loss related to my genes. I tried medications, but I only got a lot of allergic reactions and side effects.
Because of those reactions, I decided not to use them anymore. After all, I had been living with a shaven head for so many years. I had accepted it. I read about alopecia and genetics several times because of the bald spots and the itching of my scalp. Those spots and patches never grew hair back. Perhaps there is a medical solution to it, but so far…I have not felt the need to put myself through that pain and turmoil—searching for a remedy that makes no sense for me. My coping mechanisms have served me well. I don’t feel guilt or shame about not having hair. It is by choice.
It is by choice that I shave my head. It is a coping mechanism to choose not to have hair. My father, even when I was a teenager, suggested that I should wear wigs. It was mainly my family—those closest to me—who were more troubled by me not having hair than I was. That says something about what adults think and what they tell a young person.
So what is beauty and strength? How is that beauty ideal shared with young people?
I have had a shaved head since I was 22. Now I am over 50. I am happy with my life. I have decided it is necessary—and now I know I no longer need to keep any secrets.
Why has it been a secret? Because I did not want people to pity me or feel sorry for me. Yes, it was a traumatic experience as a young teenager to see my beautiful hair fall away, to lose it, and not know what to do—without any psychological support.
My life choices have shown people that I can be myself without being defined by others. Society’s idea of beauty should not define anyone.
Hair as an identity marker is a superficial trait. Somehow it becomes a symbol, and it can indicate how people feel about themselves, their well-being, and their essence. I hope my story will help people consider those who live with anything that makes them lose their hair—and treat it as a normal thing.
So many times I got the question:
Why don’t you have any hair? Why do you keep it short?
Why do you shave your head? “Oh, you must have beautiful black hair.”
There is a hair obsession in society. Through my actions, I have actively defined—for myself—what femininity, vitality, and beauty mean, beyond hair and beyond the traditions marked in different cultures regarding hair.
