Interview – Isabel van den Hoogen (17)

Since when have you had Alopecia? What form do you have?

I have had Alopecia Areata since summer 2011. We were in Sweden in a secluded park are when my sister decided to bob my hair and noticed a bald spot. When showering, I noticed my hair falling out too and one month later all hair was gone except the eyebrows.

What was your most negative experience with your Alopecia?

Half a year ago I was jogging home as three 14-year-old girls came across the road. I greeted them and as I walked away, I heard them say, “Oh, I thought that was a man.”

What was your most positive event with your alopecia?

I know a family in Germany that I often visit. They have a girl who is 7 years young and also has Alopecia. One day she simply said out of nowhere, “Isabel I find you so beautiful.” This was really a very nice moment. I also remember a 3-year-old girl in a crib who asked me why I always wear caps. Then I told her that my hair had fallen out. She looked at me wide-eyed and with a bird-flying gesture she asked again: “Just flown away?” I had to smile and she was satisfied with this answer and devoted herself again to her game.

Do you think your Alopecia will be gone some day?

You always hear of people who have experienced something positive. I simply believe in an individual cure.

If your alopecia were a person, what would you tell her?

I would tell her: “Thanks for all the experiences and the people you allowed me to meet but now you can go away now please.”

Isabel’s story

It was a bright sunny day when I arrived at Isabel’s family on a Sunday morning to talk and have tea together. We sat down at the big kitchen table and her whole family followed their Sunday morning routines. The sisters went to the kitchen and their parents were reading newspapers. They were all not at the kitchen table, but they were there for Isabel – just like all the recent years, since she has had Alopecia.

Isabel told me that after those summer holidays in Sweden she came back home to Holland and a week later, they went to the dermatologist. Her mother, Petra, did a lot of research, but Isabel did not want to know anything about it. She said, “I just lived on.” When all her hair was gone, she decided to wear a wig.

In general, much changed for Isabel because she was now in high school, in a new class and with new teachers. All of them were very good to her and supported her. Not a trace of ridicule or teasing. I was very glad to hear this. A girl at this age has enough to worry about, and it is good that she does not have to deal with immature or hurtful comments…

There was a major change for Isabel when she first went to Germany for the first AA meeting in 2013. Without realizing it, she started to deal with her alopecia much more openly since this meeting. This became clear to her in retrospect. She always went to these meetings with her mother and her younger sister. Sometimes her father would come along. She enjoyed the “family meetings” a bit more than the “Come Together” meetings. At the “family meeting” it was as if they were a huge family, who meet twice a year and do something beautiful. At these meetings Isabel also met a family with two girls, the youngest of which was 7 years younger than she, but Isabel made became friends with her 15-year-old sister. She often visits the family and she enjoys these visits very much. At home, Isabel does not wear a cap. She feels safe in this environment.

Later on, Isabel finished high school and decided to take a gap year. And in that year, she also decided to remove the wig. She didn’t want it anymore. And Isabel liked himself better wearing a cap. She did her internship in a family, where everyone was very open and friendly to Isabel and did not treat her differently because of her Alopecia. Later, the children’s mother told her that the kids would often go outside in the summer, put on caps and ‘play Isabel’. This touched Isabel’s heart very much.

After the gap year, Isabel did an internship at KiTa nursery school, where she now has an apprenticeship. During her first year of apprenticeship at the new school she explained to everyone what her Alopecia was all about and suggested that if any of her classmates should have questions about it, they could come to her at any time and ask her. I was very impressed by Isabel’s openness and willingness to speak openly about her alopecia.

Isabel shared one of her memories from her working at KiTa nursery school with me. In the afternoon the very young children went to take their nap and the bigger kids were also taking a break. Isabel came back from her lunch break and was playing with twin girls. While sitting with one of the girls on the floor, she was speaking to the other twin. The girl who was at Isabel’s side wanted to tie something around her head and her cap was in the way. So the girl pushed the cap away and dropped everything. Her twin sister was watching this and cried out cheerfully and with a bit of apprehension, “She really does not have any hair!” The trainer said, “Of course this is true, you see!” Then Isabel put her cap back on, said that it was okay for now, but asked the children not to behave like that in the future. It is sometimes very exciting to see how other people, children in particular, respond to Isabel’s situation. I also feel that Isabel is even more aware of how she is perceived and how she communicates her alopecia.
When we talked about all the therapies, I was astonished by how clearly Isabel could say for herself what was right for her and what was wrong. For my part, I had only recently realized this for myself, while she at her young age could clearly say what she was trying to do and what she felt was repulsive from the outset. For example, she once injected cortisone. She had such a headache the next day that she did not go to school. Every week, as more injections were prescribed, she did not want to continue the treatment. She also tried Ylasai Naturcrème and hair growth activation spray. And she had to apply these medicines in the morning, at noon and at night. She also tried a paste made of some powder, egg and yogurt which she had to apply onto the head and once a month onto her whole body. The hair came back and even grew 5cm long over a week, but soon it was all gone again.

Then Isabel understood: “Come what may.” She also saw at the meetings, that there was nothing that could really help. Even without these meetings she would not have wanted to try anything more. I asked her what impact Alopecia had on her social life. “Actually, I’m less likely to go out. No outings with friends or that sort of thing. Maybe it has something to do with my character as well, but hair loss has played an essential part in the fact that I do not go to discos”. When asked if she regretted this, she replied, “As I said, I don’t think it would have made a big difference for my social life if I did have hair, but I would have definitely preferred to go out more.” “How would you like this situation to change?” was my question and she told me that her eldest sister once bought her tickets for «Tschätteri» concert without telling her and that was really cool. Isabel then told her sister that she wanted to be invited to go out more often, even if she just ‘dragged along’, which she then took close to her heart.

“Has Alopecia changed your definition of beauty?” was my next question. Isabel thought for a while and then said, “Yes, and no. Previously I had no prejudices against people but since I have had AA I am even less prejudiced than before. I’ve learned more about acceptance, and that everyone has their own personality and their own beauty. ”

Suddenly, Isabel brought our conversation back to the topic of healing. She told me that the father of the German family she was staying with once asked her if she could actually do something without wearing a cap. Isabel has very fine hairs on the temples, which are not covered by the cap, as opposed to the rest of the head. During the summer holidays in Belgium, she had run around all summer without a cap. After the holidays, Isabel noticed that fine hairs started growing in a few places. But she will continue to wear her cap in her everyday life.

The decision to wear a cap was some kind of inner impulse for her. With the cap on, she feels more comfortable. She sometimes ran around without her cap, but that was only when she did not have to run outside her home. Some people say that after wearing a wig, a cap can be a transition stage before a person is okay with not covering his or her head at all. She doesn’t not think so. It is indeed a transition process, but she has defined it for herself that she feels more comfortable with her cap on. It is also not her final goal to start walking around without her cap.
Having discussed a lot of topics with her, I gave her another experience report to read, so we could make sure we hadn’t left anything out.

Isabel recalled two events that she wanted to share in this report:

After her holidays, when she went to Germany with her family, they wanted to go hiking one day. It was a very hot day and she asked her sister if she could take off her cap and her sister agreed. On their way they met a stranger, and this was the first person outside her social circle to see her without a cap. The sister looked at Isabel, concerned that it could upset her, but for Isabel this was all right.

Isabel can also make jokes related to Alopecia after all this time. Once they wanted to paint picture frames at KiTa nursery school and the instructor asked who had hairpins at home. Isabel answered that unfortunately she could not be of help here and she found it amusing to see that the people present did not know how to react. Even in her family, when she makes jokes, sometimes her own family, after all these years, do not know whether they can laugh at her jokes.
I think the most important thing is always that the person concerned finds some sort of inner peace of mind while having to deal with Alopecia. And Isabel has definitely found hers. In my opinion, it is an inspiration for all young people – even those who do not have Alopecia.

In conclusion – What would you advise future Alopecia patients, Isabel?

That they accept and start loving themselves the way they are as quickly as possible. I was so much encouraged by the family I have met in Germany. I would wish such support for everyone. Such an encounter that helps you come to terms with yourself and live a normal life with Alopecia.