My view on alopecia

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

Hi I'm Ben and this is my first blog!! Victoria has posted my story which you can find here if you haven't already seen it: http://prettybaldonline.blogspot.co.uk/2015/05/real-life-male-alopecia-story-meet-ben.html

Alopecia...

It doesn't sound particularly appealing does it?

That's because its not, there's not many people in the world who would voluntarily get rid of all their hair. And I have to say it's definitely the most difficult thing I have had to overcome in my life. Although I have come to terms with it and am much better with coping with it than I used to, I still wish everyday that my hair would come back.

It's probably not surprising and I'm sure there's many of you who feel the same way. But genuinely, I think about it everyday and wish it wasn't the case. I look at myself in the mirror and think 'eww'. I think 'how could someone find this attractive?'. And then I tell myself, 'shut up, what's the point in worrying about it, it is not that bad'. Hmm, perhaps that's a good or bad way to look at it, you can make a judgement on that.

'It's not that bad'... I think telling yourself this can either be seen as a good coping strategy or a misconception. On the one hand, it helps in being more positive and makes you more comfortable with your alopecia. But on the other, it can downplay what in reality, is a huge deal. I am not saying that it should be all consuming but just, it has the capacity to be. Sure you can say 'at least my condition is not life threatening' (quoting myself there) and although that's true and something you should be thankful for, it does not bring your hair back.

Personally, I think what takes the biggest toll, psychologically, is the fact that alopecia leaves you feeling helpless... It leaves you feeling that resistance is futile and it leaves you feeling that there's no hope for your follicles. The shear nature of something that's out of one's control has always been frightening, this is no different when it comes to alopecia, as it is a problem you cannot escape... It is literally right on top of you.

This 'problem' you cannot shake can often make you feel alone, it might make you feel like you are fighting an entire army on your own. However, we are not alone and this is something I have realised fairly recently and it has definitely contributed to my mental improvement recently. Realising that there are others like you, fighting the same fight, oddly, makes you feel better. It is always just nice to have someone or some people who understand how you feel and its something that people that don't suffer from can struggle with. It is nice to know that there are others, and since I have found a wider community of alopecians, I have felt much more comfortable.

There may be many of us but perhaps not as many as you expect... According to the NHS, there are 1 in 1000 people who suffer from some type Alopecia in the UK... Which means there are roughly 60,000 people in total who have either alopecia areata, totalis or universalis. Which sounds like a huge number but in reality that is 0.001% of the UK's population. Weirdly, this makes me feel better as it makes me feel very special. Furthermore, 1 in 200,000 people have my type of alopecia (universalis)... Which if you do the maths works out to 35,500 people IN THE WORLD that have the same condition as me (you could not fill most big sports stadiums with that amount of people)... Thats such a small amount of out of 7 billion; you would need 2.5X that amount of people to fill Wembley stadium!!

Apologies for the stats and football stadium comparisons but thats how my mind works!! The point is, that if you have alopecia, you should feel special because it makes you even more unique as a person. As I said in 'my story', it is what makes you, you. Having this condition builds up so much character and inner strength, that it will equip you to overcome any adversity that you will confront in the future; in this sense, view it as a strength!!

Lastly, I would like to mention my personal, most used coping strategy to my alopecia. I am always the first person to make a joke about it (rightly so), I do realise that occasionally that they are misplaced and/or not funny but making comments about it makes me feel more comfortable; I guess it really comes down to the fact that I think everyone else is thinking it (which they probably aren't) and that I have to say it to avoid others thinking it without my knowledge- I want to be in control of when people think about it I guess. That is something I've just figured out while writing this, its just a way of normalising alopecia for me. I do worry however, that people think I mention it too much and think I am doing it for attention when in reality it's my way of dealing with it!

All in all, to summarise my opinion on alopecia; I think it is unfair because no one deserves to feel like they are helpless against their own body. However, I do think it is important to think positively and remember that in the long wrong this condition will benefit you in terms of your character... I mean who knows, because of the fact that evolution occurs through natural selection of random genetic mutations, we could be the next step in human evolution; this mutation in our genes may be advantageous in the near future! I digress, I think it is important to leave you with my motto on the subject as you are so much more than your hair (or lack of):

Alopecia doesn't define you, you define alopecia

Explaining to children about hair loss...

Whether you lose your hair to alopecia, or through chemotherapy, it is inevitable that at some point at least one child will ask you about your lack of hair. In my experience, and through discussions with everyone else, it's never a malicious question, merely a curious one, but that doesn't necessarily make it easier to handle...

One of the reasons that children will ask about your hair loss is that it is visible; often the other symptoms of cancer or autoimmune conditions aren't visible, so it's natural children will attach to the lack of hair. Another is that it is 'different'; not that that's a bad thing, but that it's a change from their own appearance and experiences. What this results in is kids expressing their innate curiousity in a bid to understand the differences and their causes, working to categorise the world around them and whilst it might feel like they are singling out your lack of hair, they do the same with spots on the face, rashes, lisps etc.

A while ago, I read a blog post detailing a mother's first hand experience of other people's reactions to her child's disability; not negative as you might expect, but in fact how parents influence their own child's reactions by subconscious positive reinforcement. It's worth a read, but what this post highlights is that even if we don't mean to, our own reaction to situations and our actions in relation to them, heavily influence how a child will in turn react, now and in the future. By positively reinforcing actions, such as praising a child for playing with a disabled child, we are in fact highlighting the differences, not reinforcing the natural behaviour. In the same way, our reactions to a child's question about hair loss has the ability to form their entire opinion of the topic, and that is something we need to be very aware of.

The first thing you have to judge is the rough age of the child, as well as their capacity for an explanation. For some, a brief discussion will be all that is required and for others, a more detailed, knowledgeable explanation will be suitable. It will also be important to think about the question they asked and how they phrased it, as this can help form your answer. For example, some will ask why you have no hair, and some, like this gorgeous little boy did, will phrase it differently and that will help you gauge your response.

Some people may not agree with me, worrying that the idea of alopecia is too difficult to understand, but for me, the truth should be the focus of any answer. In every scenario where I have been asked, I have always explained that the condition is called alopecia and that my hair fell out because my body didn't like my hair any more. Every answer has some variation of this explanation, with more detail for those who want it, and a simple sentence for those who don't or who are really young. I do this for two reasons; the first is that a simple, honest explanation helps to inform and educate, making the most of every opportunity for awareness, and second, it ensures that I don't create more questions than I answer. Other things I include are things like "you know your body fights bad bugs to help you avoid being ill; well my body got confused and thinks my hair is a bad bug, so it got rid of it." Everything I say is based on the truth and whilst it might be an oversimplified version of an autoimmune condition, basing it on the truth helps me feel comfortable and respectful of the child as well. I've met many people who also give variations on this explanation, including relating alopecia to food allergies and an allergy to their hair, and you too will need to find something that helps you to explain it.

Something which often gets said to me is that people get feelings of fear and dread when they get asked this question, particularly if exposure of their bald head was accidental, but remember if you handle it positively and openly, you might just reinforce their positive feelings. At the end of the day, they probably don't realise it's even an awkward thing for you, and try to use that knowledge to fuel your own positive feelings.

Anyone else have any tips for explaining alopecia to children?

Victoria x

www.prettybald.co.uk Twitter: @PrettyBald