Happy 5-year bald-anniversary!

5 years ago, was the last time I was able to go through the little hair I had left, the last time long strands were attached to my own head, the last time I was able to see who I was at that time. But it was also the first time I was able to take control into my own hands, the first time I did not have fallen hair laying around everywhere and the first time I was able to start this new chapter in my life.

My old hair; before alopecia

It is odd. I cannot believe I have not had hair for 5 years. I am not able to feel the wind go through my hair, to go through my hair with my hands or to feel my hair getting wet when jumping in a pool. The strangest thing is, I also really do not remember what it feels like, not even a little bit. I don’t remember what it feels like to style my own hair, to comb too hard through tangles that it hurts or what it feels like when someone goes through my hair.

Enough

13 November 2016 was the day I decided it was enough, I had enough. I had enough of the hair lying everywhere as it fell out, to see the sad little strand of hair on my head and to be insecure about what would happen next. No, I did not plan it in advance, I had no intention of shaving it off that day, I just suddenly knew. I knew it was time to move on, time to let it go. I just could not deal with all the hair lying everywhere anymore.

When I realised my alopecia was worse than I thought

If you do not have hair loss, then picture this. Every time you touch your hair, hair falls out and it is in your hands. Where do you constantly leave that hair? I had to throw it in the trash multiple times a day when I was at school and that was awkward. You cannot brush your hair properly anymore without seeing the huge chunks of hair coming out, same goes for showering. Waking up means finding hair everywhere and you are also almost like my dog who leaves his hair all over my clothes; my clothes were covered in fallen hair.

The last pony tail. Picture made by Marjolein Volmer

Now, for those that still have your hair (= do not have hair loss), it might also seem a little dramatic to say I had to “let it go”. However, there is much more attached to those strands growing out of your head. I had to let go of who I was. I could not afford to be insecure anymore; I did not want my alopecia to ruin my life. I had to deal with the fact people were going to treat me differently, especially in the beginning. I had to deal with the image in the mirror not adding up anymore. I had to deal with the fact that I looked and was different from that point on. I did not know what I could expect; how would I feel, how would others react?

Emotions

It was hard. I tried to fit in, but sometimes I did just feel different; odd you could say too. From the beginning I was openly bald. I shared pictures with my hair loss on my private account from the start and quickly after shaving my head, I posted a bald picture. However, while my friends were getting approached by guys, I saw their interest in me going away quickly, making me feel even more odd than I already did. My friends were asked if I was sick, and people were very reluctant to talk to me about it.

All I wanted was for people to approach me and talk to me about it. I did not want to make a big deal about it. I was Anne with the thick hair first, and now I am Anne without the hair. But still Anne in the end.

The whole process was strange. From wig fittings where I had no idea what I had to look out for, from not knowing how to put on my wig in the first place. I am not kidding; I was 2 hours too late at a friend’s house because I could just not make it work. It is also the little things, like tucking your hair behind your ear when you suddenly realise you do not have it anymore; I still do this.

I hate looking at old pictures and I actually hate to show them to others. I am happy with the way I look, most of the times, and proud of the personal development I went through. However, I do often when I see those pictures, still feel like I downgraded. Others talking about their glow-up and all I can think about is how I lost my hair during my “glow-up” and that makes me sad.

Reflecting

Reflecting back on these 5 years, I can tell you that having hair loss and dealing with it, is not a process that has an end. It is unpredictable, you never know if you will lose more hair and your emotions fluctuate too, which is totally okay.

During these 5 years I went to feeling numb about my hair loss and ignoring it, to feeling shocked and then okay with it, to realising I may have suppressed my feelings and not deal with it properly, to now knowing it is okay to feel sad about it and proud at the same time.

In the beginning I was afraid to hide my baldness. I think that is the reason that I was always so open about it, I was more afraid of people not knowing than people knowing. I had this urge to tell everyone (and 5 years later I do still tell everyone) and I was afraid I was never going to accept it if I did not announce it to the world. I was afraid that wearing wigs would mean that I was hiding, and I felt like I always needed to be positive about it, when that was not always the case. I can see that now clearly, but back then it felt so normal.

Wearing wigs is not hiding. I love to wear them as an accessory and sometimes it is a necessity when I do not feel comfortable in my own skin. There is nothing wrong with wearing a hair piece. However, for me it is important that I can look in the mirror and still like myself without it. Sometimes that is easy, sometimes that I impossible; it is all part of the game when having hair loss.

Now that we are talking about emotions, please remember to not push yourself. People often ask me for tips on how to accept hair loss, but I barely give any. This is because it is your own personal journey, based on your own experiences and emotions. Trying to replicate someone’s strategy may do more damage, because it does not fit you as a person. Try to not ignore your emotions like I did, but rather embrace them. Write them down, talk to someone about it. Know that your feelings are always valid; no matter what someone else says or what you might think yourself.

Emotions fluctuate. It is normal to feel okay about it one time and not okay the other time. Give yourself all the space you need during this journey. You should not be ashamed of it; you should be proud. Proud of yourself and the way you are dealing with this. You got this, you really do. Even when it feels like it will not, there is light at the end of the tunnel.

Thank you for being here!

These 5 years have been a crazy ride, but one for which I am grateful. I found all of you, I found my passion for writing again, I am able to inspire and help others and I was (and am) able to develop myself on a personal level.

When I was younger, I was always insecure because I was bullied. I focussed so hard on trying to fit in, being someone, I am not and always worried about my looks. Looking back at old pictures, it is hard because I feel like I “downgraded”, but that is only when focussing on looks. When we look at who I am as a person, my behaviour, I definitely upgraded.

When I realised, I was really becoming bald, I slowly let go of the idea that I had to look incredibly beautiful to fit in, that I had to be perfect, that the popular people needed to like me. I am so grateful for those insights that alopecia has given me. Of course, I am still focussed on looks sometimes, there is no escaping from that, but it is not controlling me anymore. I finally know that I do not need to be perfect, even when I still try sometimes.

Alopecia (or hair loss in general) can give you insights you may never know you needed. 5 years ago, was the day I was kind of reborn, as one of my friends called it this week. It was a fresh start. A fresh start to figure out who I wanted to be and what I wanted in my life. A fresh start to getting to know myself and how strong I really am.

I have done various interviews to spread awareness of alopecia and I am so proud of that. I am so proud of the fact I get to talk to all of you and that you care enough to read this for example. I never would have wanted to miss out on this, never. This whole journey made me the person I am today. Someone that is determined and passionate. Someone that loves to help others and to write. Someone that I lost 5+ years ago when I tried so hard to fit in. It is almost as if I let that old persona go with every strand that fell out.

Be proud of who you are! (photo: Carolien Sikkenk)

If you are going through hair loss yourself now, I want to tell you to not give up. I know it is hard, seeing all the hair, seeing yourself slowly fade away. But I promise you, it will get better. I cannot tell you when, I cannot tell you how long it will take, and I cannot tell you how to do it. You will figure that out on your own during this journey. But know that you are strong enough to deal with this and you will find a way that suits you best. At the end, that is what really matters. It does not matter what someone else thinks, what matters is what you feel.

But I beg you, please do not let your hair loss ruin your life. Do not let it hold you back from doing all the things you love. You are still worthy without your hair, and you are also still beautiful without your hair (or with less hair). Your worth is NOT determined by the amount of hair on your head.

I want to thank all of you for being on this journey with me. A journey with tears and with laughter. With ups and downs. A journey I despise and love at the same time. But it is my journey and one I need to undertake. I am happy I can do that with all of you.

Until the next bald-anniversary!

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Thank you for reading!

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