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

Am I normal?

As you might expect, I keep track of a lot of fellow hairloss sufferers, am engaged in a lot of hairloss groups / communities and read up a lot about it, not to mention the emails and tweets I receive along the way! Thinking specifically of Alopecia here, something many are keen to know is 'Am I normal?'

Some of the questions I've seen / received in the last few weeks:

• The areas of regrowth on my son's head is hurting him; is this normal?
• The hair on my head is regrowing, but it's white; am I normal?
• After years of no hair, it's suddenly regrowing; has anyone else had this experience? Is that normal?

The answer? Yes! Totally! Or maybe I should say no as well!

Let me explain! The longer I've had alopecia, the more I have read and the more people I have met, the more I have realised that actually, there is no normal, or everything is normal, whichever way you prefer to look at it! Every single person's story is different, and whilst there are similarities in the behaviour of each person's alopecia, there are no two stories which are exactly the same.

Answering the questions above:

• Some people answered yes, and some people answered no. I don't personally experience pain at regrowth, but I do when it's about to or falling out. I have however also met others who have pain when it grows, but not when it doesn't, and people who've advised they never get pain at all!
• Personally, mind always grows back white (expect for the eyelashes), and it's never reached the stage where it's later turned brown again. I've also met people where it grows back the natural colour immediately and those where it grows white then changes. It seems there is no normal regrowth behaviour with alopecia.
• I've had years of no hair, and despite as mentioned short bursts of regrowth that never reach any considerable length, I've never had it back. I've also met people who suddenly had a full head of hair which has stayed permanently, and those where the growth later fell out again!

When it comes to questions like these, I've come to realise that either everything is normal, or alternatively that there is no normal. Every single individual case I have come across has similarities and differences and as yet, I've never found two the same! I've met identical twins where one has lost hair, people on immuno-suppressants who shouldn't lose their hair but have, even a person born with an alopecia condition who has never grown hair! Baffling! Yet at the same time reassuring to know that whilst it may seem strange, abstract and even unsettling, there is no right or wrong way to have and experience alopecia and therefore the answer is yes, you really are normal!

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald