Interview – Priscilla Schrag (42)

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

I have been affected by Alopecia Universalis since December 2012. The hair loss started in December 2012, in July 2013 I was given the definite Alopecia Universalis diagnosis.

What was your most negative experience with your Alopecia?

I went camping with my sons and one day we went to the fishing pond nearby. At the campsite I was wearing a wig but when we were at this remote lake, I took the wig off. While we were sitting comfortably on the bank enjoying our time together, an elderly couple rowed past in a boat. The elderly woman looked at me disapprovingly and said loudly so that I could hear: “Such an appearance should be forbidden.”

What was your most positive experience with your alopecia?

There was this moment on a cookery course I was taking with some friends. I had to flambé spaghetti, and at that very moment I thought: “What if my wig catches fire?” In one act of spontaneity I flambéed the spaghetti with one hand, and pulled off my wig with the other. It was like an act of liberation. Since that moment a lot has happened to me – in the positive sense.

Do you think your Alopecia will be gone some day?

I do not want to worry about that. Right now, it’s all right. If the hair should come back one day, it would be nice, but it would not be bad if it didn’t.

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

Take me the way I am! Why do I have to adapt to you all the time? Why don’t you adapt to me and my needs?

Priscilla’s story

On a gray Sunday in November, I met Priscilla for a glass of Prosecco and some very tasty canapes. Together with her was her good friend Margit. I knew Margit from our very first Alopecia meeting, which took place in Appenzell. Margit was one of the party from the very start and so she became a big supporter for Priscilla over all the years. But it was quite a while until the two could talk so openly about it. Why this was so, she told me later …

We were sitting on a long wooden bench in Priscilla’s living room and I inquired about her weekend, which she had spent in Stuttgart. She already “fed me” with the first Alopecia story. In a bar, a man showed a keen interest in Priscilla. However, as this interest was only one-sided, and the man did not stop trying after being repeatedly rejected, Priscilla could not think of a better way out: she took off her wig! She thought to herself, “Then he will certainly have no more interest in me.” So it worked, fortunately for her, too! For at last he was gone. Priscilla aroused the interest of the bartender with this action, and he gave her a thumbs-up gesture, which meant that he found this action really impressive! Later, he came to her and her companions, and on the following day the friends of the bartender showed the two women around the Christmas market in Stuttgart. It often happens like that with Alopecia … One drives away those who are unpleasant and attracts those who are ready to accept him or her for what they are.

After this funny anecdote, I sat down with a notebook, a laptop, and a dictating machine, leaving Priscilla to talk. Margit entertained her with more stories and was just there for Priscilla. Priscilla told me that her hair loss had occurred in December four years ago. Three months after her divorce. First, she attributed the hair loss to the stressful situation and did not worry about it. The first person to consult had been her hairdresser, who advised her to try some special shampoo and hair care products. Later she received some well-meaning advice and went to the pharmacy where she was advised to try Burgerstein and Priorin. She tried it out. In the following January she still thought the stress was to blame and went to the doctor, who wrote “diffuse hair loss” in her medical file. Some friends of hers suggested it could be the case of age-related alterations or other hormonal changes. The doctor did a test and found iron, vitamin B and vitamin D deficiency. Iron was then infused intravenously. The vitamins were injected for over six weeks, once a week. There was no improvement. Then things got worse. She tried to talk about it with her friends, but they all soothed her saying that her hair loss wasn’t even visible and that things would get well again soon. For the umpteenth time, she went to a medical center, where she was told her hair loss was attributed to purely psychological causes. It was as if someone had put a stamp on her.

With an androgenic hair spray, she decided to go through for tedious treatment process. She doubted its efficiency, as her case was no just ordinary spot baldness, but a type of hair loss that affected her whole head and slowly but surely led to complete hair loss. Priscilla works in the hospitality industry and she now wears a wig. She talked about her problem at her workplace and got good support from her work colleagues. Things were going well for her, up until a certain moment when after losing all the hair on her head, she also lost her eyebrows and eyelashes, which meant that her whole face ‘was gone’. This made her feel weak, it was a real blow for her. Some time later, she discussed her issue with some familiar guests of the restaurant in which she worked at the time. One of the guests suggested she should do a checkup of all the organs that could be responsible for the cause of hair loss. He advised her to do various blood tests, to see what laboratory results could show, to check her thyroid gland for hormones, etc., to make sure everything was looked into. The medical center considered that it was still too early to take such measures, but Priscilla insisted. According to the results of the checkup, a visit to a dermatologist was inevitable, but everything else was fine with her. She told me that she started having jitters because of waiting, as she felt the time was slipping away and with it, all her remaining hair. So she went out of her doctor’s office straight to a dermatologist, whose surgery was only a few streets away, and the doctor happened to be there, at the counter. She took Priscilla seriously and arranged her an appointment the very next day. She gave her a head analysis, and then it became clear: it’s Alopecia. What had never been mentioned in her previous medical files was now certain. The thing finally got a name in June 2013.

In the autumn, she was examined at the University hospital in Zurich, and she decided to start the DCP therapy in December 2013. Over these months when it all began, her social life was no longer the same as it used to be. As she felt abandoned and misunderstood by her friends, she turned away from them. She just stayed at home, she told me. When she was among people, she felt a great need to talk about her hair loss. However, she felt that she was an embarrassing burden for the others. Today, she realizes aware that her environment just couldn’t understand her then. If none of the doctors took her problem seriously, why should her friends do this?

She had a good feeling about the DCP therapy, but her joy was premature. After months of trying to define the right dosage, the moment finally came when she could start the therapy. The dose seemed to be okay in the test phase, but a few days later her whole scalp was burnt. What she was most disappointed about, was the fact that there was always some new doctor sitting in front of her, and she had to start explaining her case all over again. She was really frustrated and was starting to lose faith. Supported by Margit, who was working as a caretaker, she gave vent to her frustration and wrote to the highest authorities of the university. Two renowned professors then took up her case. Impulse therapy and cortisone were prescribed for her, whereupon her hair began to grow again. At Christmas 2014 she was able to have a real hairstyle again.

But just like so many times before, her joy did not last long. One of the two professors told her that this illness was running like waves. But on 6 January 2015 she realized she’d had enough. They offered her two new therapies. However, none of them were an option for Priscilla. And thus she finished all the therapies in the University hospital. But instead of being disappointed that nothing had worked, something happened to her that I personally know very well: her psyche went uphill. It was okay. It was really okay. And then came the moment with the cooking course which she mentioned before. Margit was there as well and added that the people had even applauded. I asked her, “Did you feel like you were free at last?” She said yes. And this feeling continues up until now. In the summer holidays of 2015 she practically never wore the wig. She added, if someone came up to her and asked her: “Would you be happier with hair?” she would not know what to answer. She could not say whether she was happier now, or hypothetically, would be happier if she had her hair.

It is also always incredibly exciting to observe what happens with the environment of an alopecia patient. Priscilla’s younger son could not stroke her bald head for a long time. He no longer invited his friends to come over to his home. Today, it is different and he (“thank God”) invites friends to his home, just like before, not all of them, but she knows that he is now standing by his mother, who is just a little different. Priscilla rose from the table and refilled our empty plates. In this short pause, Margit sat very close to me at the table and said, “Yes, it was extreme…” Priscilla came out of the kitchen again and said with a smile: “You are forgiven for this bit.” Priscilla also gives me the impression that she does not regret anything. You learn a lot about the people. Those who are not supposed to be around you will be gone and then there are others who have been keeping quiet for a long time and are suddenly back again, and this gives great support. She is extremely grateful that there are these people and friends, that she no longer thinks of hiding away. One also learns to laugh about it. The two of them have a beautiful story on this subject: shortly after Priscilla’s personal liberation, Margit and Priscilla went to Berlin together with some friends. Of course they wanted to have a good time and went for a ride on these double-decker buses, which have an open roof, so that one can admire the city in full. In a lime-tree alley, Priscilla was lucky not to bump her head against branches that were sticking out at their eye-level. But it was not long before one of their girlfriends was hit by a branch. The friend said, “Luckily it did not happen to you Priscilla!” She explained that you had to imagine the comedy of the situation: imagine Priscilla going down to the bus driver asking him to stop because her hair was stuck up in the branches of a linden tree. This episode was the running gag for the rest of their stay in Berlin.

Later Priscilla and Margit went to London and when they were having drinks in a crowded pub her wig itched frightfully. There she could not help but remove her wig. The gentleman sitting next to her almost choked on his beer.

Step by step, Priscilla regained her freedom, and now she often shows up among friends without hair. It also became more aware of her environment. Margit said that on the street she would often recognize women who had Alopecia, even though they could be wearing a wig. She had never noticed this before. Now, when she knows about this issue, she is more sensitive and looks at the people on the street quite differently. Priscilla has also found a way to treat itself. She contacted the theater company and joined it. She explained that the experience she got there, acting different roles, mixing with young and older people had given her a lot.
Applying makeup, changing people’s appearances with the help of wigs, touching hair with her hands always gives her pleasure and great satisfaction.

At some point, she got so fed up with people wondering if she had cancer that she posted her first picture on Facebook without hair. People’s reaction was overwhelming, and it gave Priscilla strength. I also think she’s finally realized that she is what she is. When I asked her what her most negative experience was, she told me the story at the lake at the campsite, because she was annoyed by two things there: first, why can’t one show oneself in society the way one feels most comfortable in today’s world? And secondly, she asked herself the following question: Is that angry woman aware that her remark would have been even more painful for a woman with cancer? This made us all think for a while…

The eyebrows and eyelashes are also often an issue. As she already mentioned, it was as if Priscilla had lost her face. Her boss at work recommended her to apply permanent makeup. She then decided to try microblading. After the tattooing procedure was over, she left the studio in tears. She was angry with herself. The beautician had been very surprised at this reaction, as she found that she had done very well. But Priscilla no longer recognized herself in the mirror, she had to get used to looking different. Why couldn’t Alopecia choose someone else for its target, not me, why do I have to adjust to it, why is it always me, why are you doing this to me? A week later Priscilla called the beautician and explained the situation to her. The beautician then understood her well. Also, you may not be aware of the protective function that eyelashes have. It often happens at work, when her eyes are tired or overstrained, they burn like fire. The glasses help now a bit, but it is simply unfair that one must also care about this issue.

Over the years, Priscilla and Margit would often talk about organizations in Switzerland which cared for all those who were affected by various diseases. Why wasn’t there one about Alopecia? Margit, who works in healthcare raised another difficult issue: health insurance companies do not recognize alopecia as a problem and make little to no payments to cover treatment and other expenses. Priscilla had to deal with the bureaucracy of health insurance and to prove her alopecia. To accept the disease is one thing but having to prove it cannot be easy for anyone …

It’s time for Margit to go home. The two hug each other briefly, check their upcoming meeting dates and when Margit wants to turn away, Priscilla holds her back. She pressed her friend tightly to her again. Seeing this put a smile on my lips. To see how someone with Alopecia lives, see how one can develop through it all is wonderful. But even more wonderful it is to see that this disease is helping strengthen friendships, it gave me a very comfortable and satisfying feeling. I hope that everyone who is affected can experience such bliss.

Conclusion – What would you advise future alopecia patients, Priscilla?

Listen to yourself and just walk the path which you feel is right for you! Listen to the doctors who are good to you and who you can trust, decide what is good for you and what is not and how far you can go. If I had relied only on doctors, I would still be with them, waiting for what would happen to me, and I would be very far from accepting my situation. I would also wish alopecia patients strength and courage, I would wish them to have a social environment which could accept and support them in this difficult time. I look back at this time sometimes with a smile and sometimes with tears in my eyes – you can find a new freedom and be happy with Alopecia.