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So I have alopecia and I’m going to run the Mersey Tunnel 10k WITHOUT my wig on.  This is not something I’ve ever done before (a 10k or be out in public with no wig on).  Both will be a challenge, for me the latter more so.  I couldn’t do this on my own and so I have some very lovely family and friends who are going to run alongside me (many of whom have never ran 1k never mind 10k so its going to be a big achievement for them too!).  It means a lot to me that they are all supporting me.  And so we would all like you to stick your hand in your pocket and donate a little bit (or a lot, up to you!) of money to Alopecia UK, a charity close to my heart that I have recently become a trustee and volunteer for.  It’s a very small voluntary charity but one which has volunteers with big ideas!  There’s not a lot out there for people with alopecia, things have changed a bit in my 18 years of having alopecia, but there needs to be more.  It’s not been easy growing up with alopecia.  And I want that to change for others.

 

And to do that I’m going to start getting alopecia out there, this 10k being the start!  If I want to see more images of bald women out there in the public eye then I’ve got to be prepared to do it myself.  But first I need to break the fear that has accumulated over the last 18 years of being seen in public with no hair on.  It won’t be easy and I’m going to be an emotional wreck yet again, but I need to do it.  At the moment I feel quite brazen if I walk downstairs to the kitchen with no wig on knowing that neighbours might be able to see me through the windows.  If there’s a knock at the door and I don’t have my wig on I’ll hide.  It ridiculous.  But its how it is.  Below are some snippets of writing from my diaries, to highlight this whole journey and bring us to now.  I’m just hoping it gives a little bit of insight to highlight that this won’t be an easy thing for me to do and is worth a donation!  For there to be real change for people with alopecia we need to change attitudes and perceptions as well as increased support and a sense of hope whereby there is research being done.  And for this reason, I’d really like you to sponsor me, my friends and my family to do this 10k.  Alopecia UK really needs more money coming in if it is to expand and grow into an organisation that people with alopecia deserve. 

 

1995 Age 11

 

…at about 10pm I realised I had hair missing.  Got very upset…

 

 

1996 Age 12

 

I’m a year 8…with no hair!  I wear a wig and it really, really pisses me off!  I keep thinking that if I didn’t wear a wig and had my own hair I would be more confident……Today was the worst day of my life ever.  Two lads told loads of other lads that I was wearing a wig…

 

 

1997 Age 13

 

…and I just want to make myself feel better by writing this down instead of keeping it inside me how much I hate myself.  (Nice and blunt).  I really, really, really wish I had hair (on my head!!) so that I had more confidence and people can’t turn round and call me wiggy or baldy.  All I have to do is look at a picture of myself before my hair fell out and I start crying (only when I’m by myself).  Then I compare myself in the mirror which just makes it worse.  In fact my eyes are watering now just writing about my hair.  Life would be so much better with hair!  People at school don’t know how lucky they are.

 

 

1998 Age 14

 

…Last night I was crying for 45 minutes about hair and life.  Can’t wait till hair grows back and I leave school.  At the moment my hair has grown on a patch at the back and then its nearly little hairs all over………If this next year would just pass by…and my hair would maybe all have grown back on head…… I can’t wait for the day when I go to school without a wig.

 

 

1999 Age 15

 

…Four years tomorrow since I realised I had alopecia.  “Good things come to those who wait”.  Which w****r thought that up and how long exactly do I have to wait…

 

 

2000 Age 16

 

Well…it’s the end of an era.  Life starts now- I hope.  Yesterday I threw my wig in the back of my cupboard and I don’t care if I never see the dreaded thing again.  I REALLY hope my hair NEVER falls out again…

 

 

2001 Age 17

 

…the prospect of my hair falling out again has brought me to a halt……I really don’t want my hair to fall out again.  I would be devastated. I want my life back.  I want to be me, the real me...

 

 

2003 Age 19

 

…oh and also I’m sick of alopecia.  Yes its back.  Again.  But this time it might just get worse and worse coz I can’t get rid of the depression & miserableness… By the way its my 8 year anniversary with alopecia.  In fact to this exact time as well…

 

 

2004 Age 20

 

…Here we go again.  I have been able (kind of) to handle it so far.  The patches grew gradually over a period of time.  They’ve got quite big but it was gradual so I didn’t notice so much.  But now in the space of about ten days I’ve got two new big patches and lots of little ones and I can see where the skin has changed colour which indicates where it is going to fall out.  It wouldn’t surprise me if within another two weeks I’m bald again.  I’m devastated.  I don’t know if I can do all this again.  Its such a fight…

 

 

2005 Age 21

 

…I am now completely bald but I don’t look at myself in the mirror all the time and cry.  I admit I do sometimes cry about my hair but not like I used to.  Touch wood I cope with it a lot better now.  Sometimes I worry that I’m not dealing with it and ignoring instead and bottling everything up again.  But I am more content now…

 

 

2006 Age 22

 

…So 2005 wasn’t a bad year.  In fact it was rather good!……still bald, no eyelashes or eyebrows now but don’t cry about it anymore.  Well maybe every now and then but I don’t hate it.  Bit of a pain in the arse though if I want to go somewhere coz I have to “paint” my face on and it takes ages……but life is good.  Its nice to be able to say that.  I think I feel like I’m on the right path, like I’m doing what I’m supposed to be doing……at the moment I’m definitely going along the lines of alopecia.  Exploring it.  Its probably a journey of self discovery/understanding but I need to do it.  And hopefully one day I’ll be able to help others.  So that they don’t all feel like they’re living this big secret.  Or that they should be ashamed of who they are…

 

 

2010 Age 26

 

…Wow!  Long time since I’ve written in here……well I’m in personal therapy.  We have to do it as part of our course, which really is also like therapy.  To be fair I reckon I maybe should have had therapy years ago……and so I will now be going back to re-visit lots of stuff and hopefully work it all out…

 

 

2011  Age 27

 

…I know there are so many things I could have that are so much worse than alopecia.  I really do.  I know how lucky I am.  But its just hard sometimes……my confidence seems to swing.  Sometimes I feel quite brazen and then other times its just crushingly low and I get the whole “but if they knew the truth”.  The truth.  What is the truth?  I sometimes think “I’m me, and what?  Deal with it”.  An then other times I just feel like a massive lie.  Like the whole of me is a lie.  My life is based on me presenting a false self.  Even to myself.  I don’t feel like me without my wig on.  But then it comes off at the end of the day and there’s me.  The real me.  Bald, one eyebrow me.  How depressing.  How could someone go for that?  They wouldn’t.  They go for hair Jen.  When I’ve got full make up and hair on.  But what a f*****g contrast between that and then me.  And so I live a life of falseness.  Because I couldn’t bear the thought of going out and living my life bald.  I couldn’t even contemplate trying to hold a conversation looking out from a face that has no hair and one eyebrow.  I can’t be who I am in the world.  I just can’t.  I would feel so utterly – what?  I don’t know like everything would just be constantly going through my head, like I would be anticipating everything that they would be thinking about me, I’d feel so uncomfortable.  I’d feel like I constantly had to give explanations out.  An explanation for myself…

 

 

2012 Age 28

 

…went and got my photo done with Daniel Regan.  A photographer doing an Alopecia Uncovered exhibition.  This will be the first time a photo of my true self will be out there for the world to see.  Kind of wary but kind of wanna do it.  I’m terrified but excited.  It marks something for me but I’m not sure what…… It feels like a release of some kind.  One of the younger Jens?  Younger bald Jen?  Because this is for her I suppose.  She would never ever have done this.  But it would have made it better for her if there were more images of alopecia out in the world that portray it in a positive light.  If being bald wasn’t so weird perhaps then she wouldn’t have hated herself so much…… The photographer from sat sent me a pic last night.  Of me with my bald head, my one eyebrow and my bitty eyelashes.  I had my eyes shut.  It’s a full face shot.  He wrote, “I LOVE this image”.  Said it was striking and showed my individuality with alopecia and also the project.  And so I cried.  and cried.  and cried…… he’s gonna put it in an exhibition and show other people.  Which just contradicts everything.  And so that alopecia becomes something to be celebrated, my individuality, rather than something to be hidden away……whatever happens I’m really glad I did the photoshoot.  I suppose I’m a bit scared of how people might react.  Those that don’t know I mean.  That whole fear of rejection thing.  But I’m sick of hiding……17 years.  Just posted pics of me completely bald on Facebook.  F**k me I’m terrified and can’t stop crying.

 

 

Happy Anniversary Jen

 

xx

 

 

2013  Age 29

 

…She’s such a happy little thing.  Really knows her own mind!  I loved it when she said to Amy, “I’ve got no hair too” and then a little bit later said “I wanna take my hair off” – and then did!  Made me smile.  I hope she never loses that.  That obliviousness to other people.  Who cares what they think.  If she wants to take it off let her take it off.  People can just get used to it.  She looks really cute with no hair.  She stands out as being unique.  You see her.  I’ve never realised that before but I think being bald gives you an extra something.  You see someone’s smile more.  You see into their eyes more.  You just see them.  It was so lovely to meet her.  I think I can do this.  I think I can support them.  It helps me to help them.  I wanna make changes.  I wanna make a difference.  I wanna see her grow up and be in the middle of somewhere and say “you know what I wanna take my hair off” and for her to still have that totally unphased look about her.  For her to just be.  With or without the hair.  And for that to be ok…… I think its proper cute.  And I want everyone else to see and think that too.

 

 

 

 

Please donate to Alopecia UK.

Thank you.

 

 

Jen

xx

jen@alopeciaonline.org.uk

@alopeciajen

 

P.S.  While you're here reading this if you'd also like to sign our alopecia epetition for more funding into research we'd be most grateful!  http://epetitions.direct.gov.uk/petitions/40068

 

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