Anette’s Hair Loss Journey with Alopecia Universalis
Meet Anette, who openly shares her hair loss journey
It all began in 2016 when I was 24 years old. My father had just passed away – far too soon – and I was overwhelmed with grief. Shortly after, I discovered a bald spot at the back of my head the size of a coin. On top of all the sorrow, I started to fear for my health. Why was I, as a woman, suddenly getting bald patches on my scalp? My black hair was long and thick, but I decided to see my doctor. What if something serious was wrong?
I contacted my GP, but she didn’t want to examine me, saying there was nothing she could do. So I booked an appointment with another doctor.
At the clinic, they ran several blood tests and discovered I had a B12 deficiency. I started treatment, and just two months later the bald spot was gone, and my hair grew back just as beautifully as before.
In 2020, it all started again
Four years later, almost overnight, I noticed that I had lost all the hair on my arms. I didn’t think much of it at first, as I still had my long, thick hair on my head. Everything was, so to speak, “as usual.”
But just six months later, my hair began to shed. I was losing more and more hair, and as it fell out, it naturally became incredibly thin in the lengths. At that point, I had no bald patches – “just” very thin hair – and I started taking B12 supplements again. But this time, it didn’t help.
I decided to cut my hair into a bob. It wasn’t long before I discovered another bald spot along my parting.
I called the doctor again. I was hesitant and may have waited a little too long because I was extremely nervous about how it would be received. I hadn’t felt heard before. Then, from one day to the next, I discovered two large bald patches by my ears, and feelings of powerlessness and despair washed over me. Was I sick? Was it something serious?
The blood tests were fairly normal. My B12 level was slightly lower than normal – but not like the first time. My doctor referred me to a dermatologist, but there was a two-month waiting list!
“Do I look sicker than my patients?”
Before I even got to see the dermatologist, my hair loss accelerated. I was incredibly sad and felt absolutely terrible – especially when I had to go to work at the oncology department. I work as a social and healthcare assistant in a cancer unit, and the situation was extremely difficult. Thoughts and emotions filled my mind. Could the patients see that I was missing much of my hair? Did I look sicker than they did? What about my colleagues? It consumed my entire everyday life. I hid my hair loss and bald patches with a headband.
Even so, I was relatively calm. Physically, I felt fine – as always. I began Googling every possible (and impossible) solution to my hair loss and tried thousands of vitamins, serums, shampoos – you name it. But nothing worked.
I simply couldn’t keep up! My hair kept falling out, and my dermatologist appointment was still far away. Fortunately, I was given an emergency appointment after about three weeks. I immediately started hormone cream and hormone injections in my scalp, B12 supplements, and vitamin D, and I had my hormonal IUD removed. Every 4–6 weeks, I had follow-up consultations to evaluate all the initiatives, so everything was continuously assessed. I was told to be patient, but I felt optimistic and hopeful because there was a plan, follow-ups, and ongoing conversations.
My joy for life disappeared along with my hair
In December, everything fell apart. I hit rock bottom and was incredibly sad. By then, I had gone from having a good amount of hair to being extremely thin-haired – I had lost almost all my hair in just two months! I completely lost my courage, my desire, and my joy for life – I felt like my life was over! Hair would grow back in one place but fall out in another.
I became more and more unwell – not physically, but the constant thoughts, worries, and uncertainty wore me down and led to more and more sick days from work. I looked very ill, and I still didn’t know the cause. My body felt the same as usual, but it was unbearable not knowing what was wrong with me.
Bald for the rest of my life?
I started seeing a psychologist. The uncertainty filled everything. Would I be bald for the rest of my life? What was going to happen? After a few sessions, the psychologist suggested I might be depressed. I simply could NOT deal with that. I couldn’t handle the thought that there were even more things wrong with me. I stopped shortly after – I just couldn’t manage the situation.
At my second dermatologist visit, I received my first wig prescription. The dermatologist still wouldn’t make a final diagnosis, as there was still hope that my hair would return.
Hair protest!
During my journey, I went into full hair protest mode. I stopped shaving my legs and underarms because I didn’t want to participate in removing my hair. Suddenly, I loved all my hair. It’s ironic, considering how many people spend a large part of their lives removing hair from those exact places. But when it suddenly disappeared on its own, it felt completely different.
Talking about it with my family helped tremendously. My mother was probably just as affected by my situation as I was. We had many long conversations. I also found great support in talking to my boyfriend and my friends.
I choose the wig
I had been looking forward to getting a wig and had expectations about how it would be, but it was a strange and unfamiliar feeling.
The hairstylist saw possibilities, but I wasn’t there. I wanted to look like myself. I just wanted my old hair back. I was nervous that others would be able to tell I was wearing a wig. Would people mention it?
My first wig was glued on. The remaining hair I had was cut very short – my friend helped me – it was a day full of emotions. I wore the wig for three weeks, but it itched and I developed eczema on my neck. It was a nightmare. The first time I took it off, my daughter cried. It was a huge adjustment.
My boyfriend asked me whether the wig should be a secret. We talked about what I wanted. I actually didn’t want it to be a secret. It healed me a little every time I spoke openly about it.
This is what I look like – I am still beautiful – feminine!
The wig truly made me happy. I began to feel better. I reached a point where I decided I had to move forward – also for my daughter’s sake.
The first time I took off my wig in front of my daughter, she only had that one reaction. Today, thankfully, it’s just everyday life. I’m simply mom.
I tried to shift my focus away from my thoughts. I started making paper flowers and spending a lot of time in nature. During the same period, I went on sick leave to find peace, and that helped me. Only later did I have the energy to ask my boyfriend how he had been feeling. We had never talked about that. Everything had revolved around me. It had been incredibly difficult for him too, watching from the sidelines. He had been very sad and very worried. My appearance had changed. It was hard for him to change the image he had of me. He never knew what he was coming home to – with or without hair.
Feeling safe with a wig at Toftild
After four months with my first wig, I came to Toftild. The connection and sense of security I had been missing at the other salon, I felt immediately here. I needed experts. I followed Josefine Valentin on Instagram and chose Toftild because of her recommendations.
My first conversation was with Claus Toftild. A practical discussion about expectations, prices, and models. Just the way I like it.
I was very happy with the new wig, and today my very first wig holds enormous emotional value for me. I still have it. The newer wigs I have since received from Toftild are much prettier and better made, but the old one means something special to me. It reminds me of a time when everything was difficult, but when things suddenly turned around and I started feeling better.
“You have alopecia”
I was diagnosed with alopecia by the dermatologist. But it didn’t come as a shock. I had already stopped taking my many supplements because I suspected that was the cause. During my long journey, I met a woman with alopecia. She looked at my hair – or what was left of it – and listened to my story. Based on that, she was certain I had alopecia. It hurt deeply. She was the first person to put a name to my situation.
New Year’s resolutions and victories
I made a New Year’s resolution for 2022: to go to work without a wig! In fact, I fulfilled that resolution on my very first workday of 2022. It still felt strange, and it took several tries before it became “normal” for me.
After some time at work, I got the first comment from a relative of a patient: “Do you have cancer too?”
I chose to engage in dialogue. It was difficult to tell a stranger about my life and my challenges. But it was also a huge victory.
“No one should think I’m a man”
Suddenly, everything hit me again. I think it was because I had to reapply for a wig prescription. I had to face it all over again. I allowed myself to be sad.
I felt that I had lost my identity along with my hair. I had always had good self-confidence and been happy with my appearance. But as my hair and eyebrows fell out, I lost the person I saw in the mirror. I had tied my feminine identity to my hair.
I didn’t want anyone to think I was a man.
“You can be bald without being sick”
I have used Instagram a lot as part of my healing process. I have often cried in stories while speaking openly and honestly about my feelings during this process, which moved so quickly that I couldn’t mentally keep up.
Today, I use my Instagram to break the taboo and prejudice that “she has cancer.”
“No – I have alopecia.”
Hair loss in women is often associated with illnesses like cancer. And before I experienced it myself, I thought the same.
A small “funny” side note: the last hair I lost was the hair in my nose. I actually cried over that. I felt a bit silly because nose hair is usually something people want to get rid of. But they were my last hairs, and in that way, it made everything final.
If I could choose just one place to have my hair back, it would of course be the hair on my head. But I actually miss my eyebrows a great deal too. I draw my brows on daily, and for special occasions I use brow tattoos from Toftild to create a more natural look. It helps restore the expression of my whole face.
I love wearing a wig. I love styling it, and that it makes me look like everyone else. But I also want to show the world what I look like in reality. I think it’s important to show that you can be bald without being sick. And I think it’s important to break the taboo of being a bald woman.
Today, I can go grocery shopping and pick up my daughter from kindergarten – completely without a wig.
My best advice:
It’s okay to be sad. Time heals all wounds.
You can absolutely be happy and fulfilled without hair.
I hope that by sharing my story, it might make the journey just a little easier for others in the same situation.
