Real Life Alopecia Story: Meet Ben

In case you haven't guessed yet, I am a bit of a fan of Twitter and as well as using it to keep up to date, I also connect with quite a lot of people through it. (If you want to connect, you can find me here @PrettyBald) Anyway, the person that I connected with this week is a lovely young chap called Ben; Ben is 18 years old and has alopecia. He is keen to raise awareness of the condition, and asked us to include his story, as well as offering regular contributions to the blog with male insights to the condition. Without further ado, here is Ben's story...

I am lucky really. This may sound odd but it's true. My name is Ben from South East England in the UK! I'm 18 and have been bald for six months due to alopecia. Usually you wouldn't associate that with being lucky but I am looking past that.

My story starts when I was 14, I had my first bald patch at the back of my head - about the size of Apple at its largest... I was fine with it, it didn't really bother me as it was small and I assumed it was temporary. Soon enough, maybe after six months it disappeared. Around a year and a half later, the same patch came back; I wasn't alarmed, just a little irritated. I assumed it would disappear soon enough. The patch got bigger and remained for a year; fortunately it was in the right place so I could grow the hair above long enough to hide it. I wasn't ashamed of it, I showed people because I thought it was a bit different and ‘no biggy'.

When I was 17, it began to annoy me more and more. I wasn't embarrassed but it was very frustrating to think it wasn't getting better! I couldn't have the haircut I wanted (not really a huge issue in perspective but at the time, horrible). As my AS level exams approached, my condition was developing... Two small spots appeared either side of the crown of my head; both about the size of a grape; again not a huge deal but I was more self conscious about these ones. My hair was long enough to hide them but the effort to cover them grew also.

Ben at 17

In April 2014, my two little spots began to grow as well as my big one at the back.... I was managing to cover them still. My exams passed and in June I was still able to hide them with much struggle and despair. I was really getting to the end of my tether with it all - I kept snapping at family members who just wanted to help, which now I feel extremely guilty for.

During this time I saw many doctors, specialists and sought homeopathic practices to help determine the cause / perhaps find a cure for my problem. A trichologist offered me hair spray with a dark brown 'paint' element which helped conceal my bald patches further... I was much more relaxed about it when I found this "solution". Many people still didn't realise how bad my situation was because, with great help from my mother, I managed to keep them hidden. Besides this, I tried many steroid creams and circulation boosting ointments to attempt to stimulate hair growth but nothing seemed to work.

A key event within all this was meeting my first girlfriend in June last year... I was very happy to be with her but I was constantly concerned about her finding out. Furthermore, the dye in my hairspray used to come off on fabric, so I was forever worried about staining her furniture. I one day decided to be open with her and talk about it, she said she noticed (how could she not) and was supportive about it. Again this made more relaxed about it and still I was optimistic that re-growth could occur.

Between July and September 2014, my hair loss was at its fastest acceleration. My two patches on the top of my head became three and the large bottom one grew further... I was panicking; “they'll all get bigger and form one big one, I know it” I said. This was my biggest fear… but I didn't think it would happen so quickly. It got to the point in late July when my three top patches merged - I couldn't cover the mass patch without looking sillier than I already did. I looked like a monk... hair around a large bald circle at the crown of my head. I hated it, I wore a hat most of the time.

Between September and October, my large 'monk' circle grew larger and I rarely had it exposed apart from being at home. I wore a wooly hat most of the time and just exposed my fringe to create the impression I had 'normal' hair. I remember going to my first concert wearing a thick wooly hat in fear of ridicule; I was so hot, it was dreadful but my embarrassment kept it on.

In early October, I thought “you know what, no one cares!!”- I made the decision to not wear a hat all the time. It was a big one for me as I stood out quite a lot, it was very odd looking but luckily my school community was very supportive and I received literally zero ridicule for it. In the same month, I noticed at the front of my hair line, two small bald patches were starting to form... At this point I was still in denial that full baldness was coming, I still believed it was going to grow back.

My hair was then coming out every time I brushed my hand through it, every time I had a shower I could see it on the floor... I now had a total of four bald patches. The two large ones then connected and then I developed one above each ear. I knew it was coming.

Early November hit and I had about 50% of my hair, on the 10th of November I went to have a haircut; I went to a proper hair salon (I started using them as they were good at doing haircuts that helped hide my patches) and I told my hairdresser to do her usual. She showed me what it looked like after she finished, my heart sank... I thought I looked horrible! The bald patches were clearly visible at all angles. “Is that okay for you?” she asked… I had tears in my eyes… I knew it was time to let it go. I told her to shave it off, “I think it will look better”. I watched her in the mirror perhaps shave off the remaining 40%/50% of hair. My mum was by my side helping me through and trying not to get upset herself.

Ben at the hairdresser - visible alopecia hairloss

This decision was key for me, I wanted to beat alopecia, not let it beat me. I was in control, I was the one who made the decision to go bald first. Screw alopecia, it didn’t own me… I owned it.

Ben pot-haircut; owning his alopecia

Getting it shaved off was a difficult decision but one I am pleased I made; it was difficult and the hardest part was coming home to my unsuspecting father and brother… I felt so nervous about their reaction. Needless to say, it was met with support and emotion. Additionally, I was concerned about my girlfriend’s reaction; “Will she still like me?” was the biggest question running through my mind. She reacted in a way to be expected - shock. But she was extremely supportive and stood by me which I hold deep admiration for. The day after I shaved my head was interesting… I haven’t mentioned this previously but I was the Head Boy for my school and therefore had to make many speeches and attend ceremonies in my last year of school.

The day after I shaved my head, I had to lay wreaths in front of the entire school at our WW2 memorials. This was, accidentally, my ‘big reveal’… I didn’t even think about it the day before BUT in a way it was extremely liberating to reveal my ‘new look’ to my entire school community at once. In my opinion, looking back, this was the best way to do it.

Since then, my hair has continued to fall out, I shaved it regularly to keep my existing hair short but in Feb 2015, I didn’t need to anymore… I've lost 100% of my scalp hair now.

Ben with nearly 100% scalp hairloss

Alongside this in the last six months I have lost much of my other body hair and various patches are missing around my body. Finally, in the last two months, what has concerned me the most is the gradual disappearance of my eyebrow hair… Both of them are at least half as thick as they were - which is extremely bothering for me as it is the next level of the condition really.

Thinning eyebrows - the worry of many with alopecia!

In the last 2 weeks I have become psychologically, much better. I have decided that it shouldn't bother me, that I should embrace it and strive to help others. This condition is a part of what makes me, me.

I am lucky because I still have a loving family, I still have a roof over my head and food at an arms reach. I still have good health in other aspects (at least my condition isn't life threatening). I still have friends and most importantly, I am still me.

Alopecia doesn’t define you, you define alopecia.

Thank you to Ben for sharing his story and watch out for other posts from him in the near future! If you enjoyed reading that, then why not check out this post about shaving.

Don't forget, if you want to become a PrettyBald blogger, we'd love to have you on board. Alternatively, you can send us your story to share with our followers, to help provide support and generate awareness too!

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald