Different experiences

www.prettybald.co.uk Twitter: @PrettyBald -- My Twitter: @baldguyproblemz 

Hi, it's the 1st of the month so here is my blog... If you haven't read it already, my story can be found here: http://prettybaldonline.blogspot.co.uk/2015/05/real-life-male-alopecia-story-meet-ben.html 

I have already talked about my opinion of alopecia, and this time I wanted to talk about the different experiences people can have with their alopecia... Although I do think I have come to the conclusion that the experience is pretty similar but there are different stages of the journey.

Pain --> Learning --> Strength

That's my experience with alopecia in a nutshell.

Pain
Of course it was painful, it was probably the most difficult thing I have had to deal with in my life.

Learning
The lesson I learnt was that with hair or without hair, it didn't change who I was, I found I didn't need hair to have a good time.

Strength
This is my latest stage; this journey has helped me become stronger as a person and I genuinely think that it will help me with any hardship in the future... And strangely, I think it has helped build my confidence.

I do acknowledge that everyone's experience with alopecia will be completely different and I wanted to see how it differed. I did a little research into others' experience's of Alopecia; I went onto a Facebook group that I am a member of 'Alopecia Areata' (we are about 5000 strong now) and posed this question:

'If you could describe your experience with alopecia in a word or phrase, what would it be?'

I received well over 100 responses and my findings were quite interesting... Some results were as expected and some were very encouraging.

Of course words like 'depressing', 'pain', 'stress', 'scary' and 'sad' topped the list with 27 in total, this is what is exactly what I expected... However, promisingly, 35 responses were extremely positive and included words like; 'freedom', 'gift', 'strengthening', 'loving self', 'learning', 'empowering' and others. I was extremely pleased to see so many people see it in a positive light!! Additionally, it was nice to see so many people enter funny answers which really demonstrates the good humour and comfortableness with their condition, my favourites included 'suddenly smooth' and 'bad hair year'.

After asking this question and seeing the answer 'a gift' from a lady called Rachel, I asked her more about what she meant... Her story was truly inspiring, she described her alopecia as a 'cataclysm to redefine myself and become a more authentic version of me, my best self'... She has learnt to love herself and believes that alopecia has improved her life; she is genuinely thankful for her alopecia. This may seem odd to some of you but I think this is the last phase of everyone's journey through alopecia... 

I don't feel like I have reached this stage as I still struggle with it and have only been suffering fully for just over a year. It seems pretty far away to be honest, I cannot imagine myself rather having alopecia than not... Rachel says she would not change anything which is vastly admirable, because if I had three wishes... Having my hair back would definitely be one of them! However, I do acknowledge that alopecia has strengthened me, I still think I have a long way to go as I haven't truly accepted it yet. I still look at myself and wish for improvement but I do think this will gradually go away, soon I hope.

Personally, at the moment, I feel inadequate and to be honest a little self pitiful because I am really concerned that no one will find my attractive. When I say this to people, they tell me not to be silly but it is a genuine concern of mine that I just look too weird to find attractive. I am not looking for a relationship but still, it does upset me. 

I do not like to feel sad about it, I feel guilty for doing so... I tell myself others have it worse, which can be useful but it is important to remember that we are allowed to feel sorry for ourselves... Saying you can't be sad because others have it worse is like saying 'you can't be happy because other people have it better'. Which makes no sense!! 

I would like to finish as usual by saying alopecia doesn't define you, which I know is true but I have to be honest and say that I am struggling at the moment. On the bright sight, I have come a long way and bumps are to be expected. I do think that eventually, I will come to fully accept it and love myself; Rachel's story has been very encouraging in that it helps provide a promising future.

BP

Getting married this year? Fancy helping with #HairlossAwareness?

Before I start this post, I must first apologise for the lack of posts in the last couple of days! Work has been manic and whilst I was hoping to write and post a couple of blogs before the weekend, I ran out of time, then gallivanted off to enjoy a wedding in Kent! That is a blog post for another time (yes I find inspiration everywhere), but in the meantime, I have an opportunity for you...

You may or may not know this, but as well as producing a few shows themselves, major TV channels also commission and buy the rights to show programmes from independent TV Production Companies. It's why you see 'produced by' at the end of many TV programmes and it also helps the TV channels keep a rein on their budgets and plan ahead!

Anyway, a few days ago via Twitter (yep, still loving it), I received a mention from Remedy Productions; they tweeted me a picture and asked me to retweet it. See it here...

@PrettyBald Pls RT xx We're looking for beautiful #brides with #Alopecia. Email casting@remedyproductions.tv for info pic.twitter.com/0QlglC10ea

— Remedy Productions (@RemedyTV4) June 2, 2015

I'm sure many people will be hesitant at the idea of sharing their special day and intimate moments with the world! I know I would be / am! However, I want you to put that aside for a minute and think about what it could help achieve.

Alopecia, Trichotillomania, Female Pattern Baldness and every other type of hairloss affect thousands of women (and men) every single year! As well as the physical effects and changes, there's the mental ones and the emotional challenges people face everyday. One of the reasons people struggle so much is a lack of widely-available support and / or research. These 'problems' are aesthetic not life-threatening and therefore are not considered a priority for research or proper support. It is exactly why charities like Alopecia UK and The Little Princess Trust exist, but even they are underfunded and struggle to do everything that they need to.

At best this lack of awareness leaves people without access to the support and help that they need; at worst it can leave people alone and isolated with negative reactions and potentially an impacted self-esteem. One of the ways we can change that is to drive for more awareness. Awareness goes hand in hand with education and education over time will help to improve reactions, encourage additional research, raise additional funds and generally improve the lives of those who suffer with it. It's what I strive for and aspire to do and what I use many opportunities for.

Granted, you may not want to appear on TV, but if you think you are up to it, why not get in touch with them? Jen from Alopecia UK did and it made a huge difference all around the world. If you're not up for TV but think you might be ready to talk about your hairloss, there's lots of other things you can do too! How about:

• Emailing us your #hairloss story so we can share it on this blog?
• Even better, become a regular contributor keeping people updated on your progress
• Email your local newspaper / news website /radio station and ask to share your story. They love hearing real stories
• Share your story on your social media and reveal your true self to friends
• Think about fundraising for a charity, sharing regular updates about your progress
• Whatever else you can think of...

One thing I will add is that you need to do something like this when you are ready; there is no pressure to let it be known that you have a hairloss condition and you may not be ready or want to share that with anyone. That is fine and is something you have to decide for yourself - sharing helped me, but it won't help everyone and that will come down to your personal characteristics and comfort zones! 

If you are getting married this year and you feel you could be involved, do it! If not, don't worry - there will be other opportunities and we will endeavour to share them with you!

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald