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

Not guilty, but it felt like it...! #Hairloss #Emotions

Dealing with hairloss is difficult! In fact calling it difficult is probably an understatement! It's challenging, sometimes terrifying, often upsetting and takes time to come to terms with. Although I've become more comfortable with my hairloss and am confident going out with or without a wig, along the way I've had some traumatic and sometimes downright odd experiences! 
I have lost my hair through alopecia rather than cancer, but a lack of awareness of the different types of medical hairloss mean that one of the most common things I've encountered is an assumption that I have cancer. What's more, cancer is apparently a green light for people to comment; some of the ones my bald head has triggered...

'You're looking well considering!'

'What's the prognosis?'

Thankfully, these comments are few and far between and even though they're a little odd, they're usually well meant. In the same way some people feel able to put their hands on a pregnant lady's bump, so too does a bald head give people something to talk to you about or comment on; it isn't meant badly.

Now, I brush these or similar comments off, or carefully and patiently explain my condition and what it means, working to ensure they aren't embarrassed but at the same time introducing one more person to the condition. After over four years of baldness, this is second nature and I've stopped worrying about it. Rewind to February 2010 however and it's a totally different story...

My hairloss took a total of nine months, starting in small patches and growing millimetre by millimetre until all the patches blended together. About four months in, when I'd stopped denying what was happening to me, I remember being so angry and depressed about what was happening. One month later and that anger was replaced by an immovable wall of guilt; guilt that I was upset about something non-life-threatening; guilt about what I was putting my family through; guilt about not being able to 'pull myself together'; guilt about almost anything you can think of. No matter what I did, I couldn't shift it; ignoring it, talking about it, even wallowing in it; nothing made a difference.

Forward another month and the patches had become more ocean than island. As I left the house, and the patches become more noticeable, I began to spot the initial puzzled looks and shortly the sympathetic ones. That's when I hit a guilty rock bottom. My guilt was no longer inwardly focused on my own condition but instead shifted outward to others going bald. I began to carry guilt about people with cancer; feeling somehow the assumption I had cancer was in some way disrespectful to those who really did have it - that in some way this misconception was my fault.

It was when I finally went totally bald that I was able to shift the guilt. As I came to terms more with what was happening to me and what that meant, so too was I able to get clarity and realise it was a reasonable assumption by others. Time also gave me the clarity to realise that I have an opportunity to educate and to help foster better understanding with people I meet. Now, I work to explain the condition, help others to understand it and generally garner more awareness.

Anyone else had a similar experience? We'd love to hear about it!

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald