We are all in this together!

Wow, has it really been 8 months since I last blogged?!

Today’s post is one i’ve been wanting to write for a while but I seem to have neglected my blogging duties……(I blame my 9 month old Labrador puppy!)

As part of my work with Alopecia UK, I spend a lot of my time having conversations about hair loss – no massive surprises there! ūüėČ But one of the things that crops up (a lot!) are comments¬†regarding¬†who alopecia must be ‘easiest’ or ‘hardest’ for. On the whole, these remarks¬†are often from¬†people without alopecia. It might be¬†journalists.¬†Or family members of those with hair loss. Or perhaps those in the medical community. Occasionally¬†it’s people with alopecia themselves.

Here is a sample of the sort¬†of ‘easy/hard’ comments¬†I’ve heard over the last few years:

“It must be SO MUCH HARDER¬†to lose your hair as a WOMAN”

“It’s EASIER FOR A MAN¬†to have hair loss. Society is more accepting of bald men”

“It must be MUCH MORE DIFFICULT¬†to have alopecia as a CHILD”

“TEENAGE years must be the WORST TIME¬†for alopecia to strike”

“It’s¬†BETTER¬†that he got alopecia whilst he’s a BABY. He’ll never know what it’s like to have hair and it fall out”

“It’s EASIER FOR WOMEN¬†to have alopecia. There are better wig options for ladies”

“It’s EASIER FOR OLD PEOPLE¬†to deal with hair loss. It’s kind of expected that it comes with age”.¬†

As you can see, a real mix of thoughts and ideas around hair loss. But the thing is, none of those statements should be taken as fact. They’re all just opinions. The person who has that opinion may be firm in their belief but not everyone will agree. Personally, I do not think it’s as simple¬†as saying it’s easier or harder for one group to cope with hair loss than another. The truth of the matter is that how much we struggle¬†with our alopecia is not down to whether we’re male or female, old or young. It comes down to our personality and our individual circumstances, including the support network around us. We’re all different.¬†It’s what makes the world such an interesting place. We have our own¬†thoughts and aspirations, ideas and emotions. We all deal with the things life throws at us in our own way and alopecia is no exception. We¬†all have varying¬†levels of support around us.

Some women with alopecia find it a lot easier than other women to come to terms with their hair loss and the change in appearance that brings.

Some men with alopecia, take it in their stride and adapt very quickly whilst other men may find it very hard to cope with their hair loss.

Some children really struggle with their alopecia but others get to grips with the changes it brings with relative ease.

WE ARE ALL DIFFERENT! ūüôā

I think it would be really helpful if we started to move away from conversations about who alopecia is ‘easier’ or ‘harder’ for and simply recognise the challenges that hair loss can bring to an individual – ANY¬†individual! Let’s recognise the psychological impact that alopecia¬†can have.

I personally think it would be great to see media articles cover a wide range of experiences with alopecia. It would be really helpful to hear about males (of all ages) and their experiences with alopecia. Recently there have been many media articles about alopecia in women and it would be great to see a better balance struck.

To anyone who has struggled or is struggling with hair loss, to anyone who has coped or is coping with hair loss,  to anyone who has thrived or is thriving with hair loss Рmen, women and children РWE ARE ALL IN THIS TOGETHER!

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Why don’t you wear a wig?

I’ve not written¬†a blog post for a while but was determined to write one during Alopecia Awareness Month and I’ve just managed to sneak one in before the end of the month.

I’ve chosen a question that i’ve been asked a number of times by journalists, strangers and even some friends.

“Why don’t you wear a wig?”

As someone who is very open about my hair loss and very visibly has her alopecia ‘on display’, I am happy to answer any questions that people may have.

However I do have a problem with this question. It almost¬†feels like the person asking the question is really saying to me “Why don’t you cover up that weird bald¬†head of yours with a wig?” or “Why not wear a wig and avoid any potential awkwardness which may come your way from being a bald woman?”

In many respects, perhaps it would be easier to wear a wig. There are some absolutely gorgeous and amazing wigs out there. If I wore one, I would blend in. I wouldn’t stand out like a sore thumb. I’d almost certainly have less awkward conversations with people. Less of the “Mummy, that lady has no hair” moments. Or the misunderstandings about the chemotherapy i’m thankfully not undergoing.

The thing is, wigs are not for all people with alopecia. It comes down to personal choice. Here are just a few¬†reasons I don’t wear one:

1. I have sensitive skin and regardless about what anyone says about wigs being comfortable, for me, there is nothing more comfortable than having nothing covering my head. That goes for scarves as well.¬†I’m at my happiest with nothing on my head.¬†I’m all¬†about comfort. It’s why I wear flats not heels! ūüėČ

2. NHS wig provision for people with alopecia is, generally speaking, terrible. I get a headache thinking about it. Some clinical commissioning groups do better than others but on the whole, people in the UK with alopecia, in my opinion, are being let down badly by the NHS on the matter of wig provision (probably a topic for a separate blog post!)

3. Wigs can be expensive and wear out quickly if worn regularly. I’ve always been low maintenance. When I had hair I’d have about two hair appointments a year at walk-in salons. I wouldn’t want to spend more time and money faffing around with wigs than I spent on¬†my hair.

4. I can’t get over the feeling that by wearing a wig I am hiding who I am. I’ve tried wigs a few times and they make me feel more sad than when I don’t wear one. It’s that simple.

Many with alopecia don’t share my thoughts. For many, wigs are a lifesaver. Wigs allow people with hair loss to do things they otherwise would not want to do without wearing one. Things such as going to work, going to school, doing the weekly shop or simply answering the door. There are a huge number of¬†people living with alopecia who use wigs to manage their condition. This is why I would like to see the situation improve around the matter of NHS wig provision.

But I do not like being asked “Why don’t you wear a wig?”. To me, it almost suggests that the wig should be the default option for those with hair loss. Yet I know there are some¬†women with alopecia who would prefer not to wear a wig¬†but it is easier for them to do so.

By wearing a wig they ‘fit in’, ‘look like they used to before hair loss’, ‘feel pretty’ or ‘don’t feel like they’ll embarrass their kids’. (These are all comments i’ve heard when speaking to those with alopecia).

As someone who has chosen not to wear a wig, I’d like to get to a point where we have a much greater awareness of alopecia. After all, it’s estimated that 2% of the population will be affected by the condition. It’s a lot more common than people think. Isn’t it about time it was given some greater attention instead of being swept under the carpet?¬†With greater awareness of how common hair loss is, perhaps there would be a greater acceptance of those who have ‘different’ appearances as a result of their aloepcia. And perhaps more people would feel happier¬†to go ‘au naturale’ should that be something they’d like to do.

I’m not advocating that everyone with alopecia should ditch their wigs. Not at all. People need to do whatever they want. What I am suggesting is we do all we can to make the world a place where we embrace differences of any kind. Where we do everything we can to make the world a place where it doesn’t matter what you look like. A world where you won’t be judged for what you wear, what piercings or tattoos you have and what you have or don’t have on your head!

What a wonderful world this would be.

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Are you getting better?

I was in¬†a DIY store¬†last week with my Mum. I was¬†looking for bathroom sealant in case you are interested which I’m sure you’re not.¬† Walking down the store, a lady approaches me and asks “Are you getting better?”

Now over the past 4 years of being a bald or patchy headed woman, I’m used to getting comments about my ‘illness’. It doesn’t happen as¬†often¬†as a patchy headed person as it did when I was completely bald and lacking eyebrows. I suppose, for many, the only explanation* for a bald woman with no eyebrows is that she is undergoing chemotherapy and battling cancer. So I can understand the mistake. It highlights the need for greater awareness of alopecia so people don’t automatically assume that a person without hair is having chemo.

(*the fact that there even needs to be an explanation of why a woman is bald is a whole other blog post!)

I’ve had the following conversations over the years, which I share with you now to give you a little insight into my life (I’m sure those of you reading this who have alopecia can relate to one or two of these):

In clothes shop:

Stranger 1 (touches my arm) : “This was me. This time last year.”

Me: “Sorry, what do you mean?”

Stranger 1: “Chemotherapy. Breast cancer”.

Me: “I’m not having chemotherapy. I don’t have cancer”.

Stranger 1: “I don’t understand. Why haven’t you got any hair?”

Me: “I have alopecia areata. It’s an autoimmune condition which means my body attacks hair follicles and my hair¬†falls out”

Stranger 1: “Oh, thank goodness it’s nothing worse. You must be so grateful”

End of conversation. Me left thinking, I was just wanting to try on some clothes, why do I now feel awkward and crappy?

In a pub:

Stranger 2: “You’re so brave”.

Me: “Why, is there something I don’t know about the house gin!?”

Stranger 2: “No, I mean battling cancer.”

Me: “I don’t have cancer”

Stranger 2: “Oh”. Walks off.

Me to barman. “Can you make that a double gin please?”

In McDonalds (don’t judge me):

Stranger 3: “My mum had cancer”

Me: “I’m sorry to hear that”

Stranger 3: “I think you’re amazing”.

Me: “I don’t have cancer”.

Stranger 3: “I think people with cancer are so inspirational and brave. You know what I’m saying?”

Me: “Yes, I agree. But I don’t have cancer.”

Stranger 3: “I think you look great in your headscarf. Don’t¬†be ashamed. Be fierce. You can beat it.”

Me: (Big sigh) “Erm, thanks”

End of conversation.

There are other examples but I think this gives you the gist of the sort of conversations I’ve experienced and encountered over the past few years.

I’ve only had one person approach me in the street and ask me “Excuse me, I hope you don’t mind me asking, do you have alopecia?” I wanted to kiss her! “YES I DO!!” Turned out she’d had a bald patch for a while and had never spoken to another person about it.

Now it’s a sensitive issue the whole ‘alopecia mistaken for cancer’ one. I’m sure some of you¬†may even¬†be thinking¬†I should leave it alone. It’s a bit of a tricky subject to tackle to be honest but I will try.¬†People with alopecia will continue to be mistaken for people with cancer until alopecia becomes something that¬†the general public¬†is more aware of¬†(Alopecia UK and other groups are working on that!).¬†The assumption that it’s cancer¬†can leave the person with alopecia feeling guilty for struggling with their hair loss and it comes back to the line that¬†I hate and the one that can¬†hurt those with alopecia¬†the most: “It’s only hair”. I’ve even heard people with alopecia tell me that “we should be grateful we haven’t got cancer”.

Here’s the thing: I AM grateful I don’t have cancer. Extremely grateful. It’s probably something I have considered much more than the average person. It’s the repeatedly being mistaken for someone with cancer that really hammers home how wonderful it is to not have cancer. So aware am I of cancer, I hope and pray it is something that I never have to fight. I have nothing but admiration and compassion¬†for those who battle the¬†cruel big “C”.¬†But that’s where it stops.

I’m not grateful I “only have alopecia and not cancer”. I’m not grateful it’s “just my hair and nothing worse”. It’s difficult for me to write those two statements. But they’re not to be read in isolation. I’ve just explained in the paragraph above how incredibly grateful I am that I don’t have cancer and how much admiration I have for those that battle the disease. But how many other health conditions are dismissed by many as a bit of a non-issue owing to the fact that it’s not cancer? “You have¬†severe psoriasis?” “Well at least it’s not cancer”. “You have arthritis?” “Well, thank goodness it’s not cancer”. It just doesn’t happen that way. I believe alopecia is quite unique in that way.

To suggest that men, women and children with alopecia should be grateful that they’ve only lost their hair and have nothing worse, adds a terrific amount of guilt to the feelings of sadness and grief they may be feeling about their hair loss. I completely recognise that many people with alopecia deal with their own¬†hair loss by adopting the “it’s only hair” frame of mind. This can be a way of coping with the sudden change that alopecia brings. But we all need to understand just what a massive psychological impact hair loss can have on an individual. I’m ‘alright’ with my alopecia now. I’ve reached a level of acceptance that many people with alopecia¬†never reach. For some¬†the radical change in their appearance and¬†society’s often negative view¬†of baldness, is enough for them to never embrace or accept their condition.

To suggest “it’s only hair” belittles the year I spent feeling depressed and despairing about my hair loss. It undermines the buckets of tears I shed whilst coming to terms with an unexplained and untreatable condition that changed my physical appearance drastically, to a point where I could not bear to look in a mirror. It makes a mockery of the days when I felt so low that I struggled to even get out of bed.

So how did I respond to the lady in the DIY store when she asked me “Are you getting better?”.

“I’m getting better at responding to people who mistakenly think I have cancer when in fact I have an autoimmune disease called alopecia areata”.

Ok, so I didn’t think of that response. But it would have been pretty cool if I had! ūüėČ

Look Mummy! That lady has no hair!!

I’ve heard these words numerous times since my diagnosis with alopecia areata in 2010. Sometimes these words are SHOUTED for all to hear by¬†young children. I’ve heard¬†these words, or similar,¬†in swimming pool changing rooms, supermarket aisles, on planes, on trains, on buses and screamed across busy car parks: “LOOK, MUMMY, THAT LADY HAS NO HAIR!!!”

I get it. I totally understand why a small child would feel the need to point this out to their parent. They have probably¬†never seen a¬†woman with hair loss before and are keen to point out this phenomenon to their mummy or daddy in case they’ve never seen one either. A¬†young child is unlikely to see a bald¬†woman on children’s TV or¬†in one of their books. As such, a bald¬†woman can be as interesting to a¬†young child as a¬†bright green caterpillar ūüôā

And the thing is, I’m not¬†that bothered by young children commenting on my appearance. Young children are inquisitive. Young children see new things around them all the time. And young children speak their mind! As the¬†‘Catchphrase’ goes, they “say what they see”. This is why you might hear a young child repeatedly shouting “Blue car, blue car, blue car, BLUUUUUUUUE CAAAAAARR”. Kids can be really annoying, huh!? ūüėČ

When we¬†hear “Look, a bald lady” or “Where’s that lady’s hair gone?” or “She looks funny with no hair”, we bald¬†women shouldn’t get offended. Although I must confess “Why has that man got boobs?!” did hurt my feelings a little! ūüėČ

Young children are learning about the world and as much as we might feel a bit embarrassed to have our baldness pointed out, it’s not like we didn’t know.

The problem comes¬†from some parents. Adults. Grown ups. Now, I understand there is no guide book which covers every parenting situation. I appreciate that raising babies into toddlers into children into teens into adults is a really hard job (probably none harder!). Your children will challenge you and occasionally place you in awkward situations. It’s how you deal with the situation that matters, not the fact that the situation occurred. Parents, when you see a bald woman approach you and your small child, please do not instantly go into a state of blind panic. I’ve seen the look of¬†worry/fear/panic¬†many¬†a time.¬†Do not¬†be scared about¬†what words your small, outspoken and often VERY LOUD three year old may direct at me. It’s how you deal with the situation, rather than what they SCREAM! Here’s a few pointers:

1. If your child shouts, “Look, that lady has no hair”, do not drag the child off and scold the child. I have seen this happen on more than one occasion. This helps nobody. It leaves the bald woman feeling humiliated and ashamed. The child feels like they’ve¬†committed the worst sin ever¬†and the parent is angry and embarrassed. Nobody wins. Instead, explain and educate. “Yes, that lady doesn’t have any hair. It’s not often we see ladies without hair but¬†I think she looks fabulous” (that would be nice to hear!) or “Yes, some ladies don’t have any hair. She maybe would prefer you not to shout about it to everyone though!” (perhaps at this point share a smile with the bald woman).

2. Chances are, if you have encountered a bald¬†woman on the street, she is ‘comfortable’ with her baldness. She has made a decision not to wear a wig or a hat or¬†scarf.¬†As such, she is more likely to be willing to engage in conversation about her baldness. It could be due to alopecia areata (like me), another type of alopecia, or a result of chemotherapy induced hair loss, or perhaps personal¬†choice. But if she is not covered up, it’s likely she’ll be willing to help explain. Not that she needs to of course.¬†If your child has said “that lady has no hair”,¬†your reaction could be “Yes, that’s right. Maybe if we ask nicely, she will explain why”. I’ve often explained to small children that my hair is ‘poorly’ and that’s why I don’t have any. I’m sure those undergoing chemotherapy could explain what’s happening to them in a similar child-friendly way.

3. Teach your children from a young age that people have differences. Teach them to be accepting of these differences. These differences could be anything from¬†skin colour, hair colour, physical ability, height, weight, scars, skin conditions…the list goes on. The sooner you teach your child to accept people no matter what their appearance, the less awkward “I wish the ground would swallow me up” situations you will have.

As somebody that goes about with my patchy or bald head uncovered, I do not actually get that many comments. But it’s how the occasional¬†comments are dealt with that matters.

I hope this might help any parents who read this (and hopefully raise a wry smile from any of my fellow friends with alopecia).

This blog post relates to comments received from young children. Dealing with the things adults¬†have said¬†will need a whole other blog post……..and maybe some censoring on my suggestions for responses back! ;-

 

To blog or not to blog…..

Hello!

This is a bit strange and new. I didn’t plan¬†to create a new blog this evening. But I do a lot of things I don’t plan. Like I didn’t plan to buy the pair of unicorn slippers I bought yesterday morning (my feet got wet in the rain and I NEEDED something to wear in the office – don’t judge me). I also didn’t plan for my hair to fall out when I was 27 years old. But it did. And it’s brought me a whole world of weirdness and wonderfulness that I would never have thought possible.

So what are my thoughts/hopes for this blog? As¬†part of my weird and wonderful journey with alopecia areata (the condition that caused my hair to fall out) I’ve been in touch with loads of people with hair loss. I have found many people with alopecia through my twitter account (@hairlesswhisper). I’m also in touch with a whole world of people with alopecia by doing most of the social media updates for the fabulous charity, Alopecia UK.

The limitations of social media is that I’m restricted to a small number of characters. The idea of a blog appeals to me as it will allow me to expand my thoughts (and no doubt ramblings – you’ve been warned!!). Also, when doing social media updates for the charity, it’s not appropriate for me to be as daft as I often am in real life….although occasionally a little silliness creeps in. This blog will allow me to add a bit more of ‘me’ into the things i’d like to say to the world about what it’s like to lose your hair unexpectedly, the impact it¬†has and the situations it¬†creates.

So here I am. I’m not sure how regularly I’ll be posting and whether any of you are going to be interested in what I have to say! But I’m thinking this blog will allow me to share some of the stories/experiences from¬†over the past four years that i’ve had alopecia – can’t believe it’s been that long!

I’m hoping that others with hair loss may find my words give them some support, strength and, if I have my way, amusement.

We’ll see how this goes. It will be nice to hear your feedback. Unless it’s to point out any punctuation or grammar mistakes. In which case, pipe down – i’m not interested ūüėČ

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