Thursday, 25 January 2018

My Hair Story

For roughly three years now, I've been suffering from alopecia.  It’s a big deal for me to put that out there in black and white because it’s so personal and private but I had a hospital appointment today (January 23rd) and I’m just feeling so sad and hopeless and so at my wit’s end with this thing that I just needed to get it out.

I’ll start at the beginning.  When I was younger, I used to get the occasional small bald patch around particularly stressful times: exams and deadlines etc.  The first time I noticed it I think I was probably in Year 10 or 11.  They could usually be completely hidden and seemed to clear up quite quickly, so I don’t remember being that worried about it back then. 

After graduating university (2014) I had a few of these little stress patches left over from the previous few months.  Third year hadn’t been great for me and this combined with a couple of other things meant I was stressed quite a lot of the time.  We lost our kitten Biscuit in November 2013 which hit me very hard; I was beyond fed up of commuting to and from university and working a job in a cinema which at that point I had begun to hate with a passion.

In October 2014 I started a new job in hospital administration.  It was fine at first, but I quickly started to wonder whether I had made the right decision.  I can’t remember specifics now, but I remember thinking I’d moved on too quickly in my desperation to get away from the cinema.

Then, in November 2014, my lovely Grandad was admitted to the hospital where I worked and passed away there within a week.  I had seen him every day he was there and it all seemed to happen so fast.  It hit me very hard and after that I couldn’t stand to be there; I was spending all my lunchtimes in floods of tears because I had to walk down the same corridors every day and be around all the same sights and sounds that reminded me of that week.  But I didn’t have a way out or I didn’t see it.  I had no other job to go to and I didn’t know what to do.  There was talk in my department at the time about getting rid of the temporary contracts (I was employed through an agency) and we had to interview for the job to be kept on.  I did, and I was offered it and I accepted, not because I wanted to be there but because I was so scared of not finding anything else.

I went along with the job offer for probably around three months before I finally told them that I just couldn’t do it.  Until that point they had no idea how much I was struggling.  I left there in May 2015.  I don’t really know how I managed to stay so long and I wish I had done it sooner because I now realise what those months of agonising did to me.  I didn’t put myself first and I regret it all the time.

This was when my hair loss started to get really bad.  It had been manageable and not a very big concern before, but now I had big patches, noticeable ones.  Whether the situation with the hospital and losing my Grandad was the cause or it just triggered something already there I don’t know, but it hasn’t been back to normal since.  Over the past few years it’s gone from bad, to worse, to okay again, to pretty good again, to nearly all back, then bad, then worse and even worse still.  The fluctuation is the most upsetting thing.  I get my hopes up that it might be going away and they come crashing down.  I’ve lost count of how many ups and downs there have been on this ride; it’s cruel.

I’ve had blood tests (nothing wrong), used steroid cream, tried everything I can think of to reduce my stress levels, if stress is even the problem.  It might have been at the start. 

I’m currently on a referral to dermatology at the hospital, but it took some time to get that.  I was reminded today that my first hospital appointment was June 2016.  The first (male) GP I saw in early 2015 diagnosed me with alopecia areata but told me it’d ‘probably’ grow back and ‘not to worry’ about it.  I only had a few patches then, I was in the initial stages of seeking help, and I often wonder whether things would have got so bad if he had just referred me then instead of sending me away to think on it for a few more months.  I think as a man he just didn’t understand the emotional impact of hair loss on a young woman. 

I saw a different GP when I went back and she referred me to dermatology.  I’ve had 5 or 6 appointments now and I’ve had treatment in the form of steroid injections in my scalp.  They hurt a lot and it’s one of the hardest things I’ve ever had to do but for a while they seemed to be helping, at least temporarily. My last set of injections was in August and as recently as November things were looking positive; I almost had a full scalp and I was getting the confidence to occasionally go out without my hair tied up.  It was still in need of some growth and thickening but it was getting there. 

Fast forward to January and I’m experiencing one of the worst fallouts I’ve ever had, and I’m really struggling.  It’s affecting most of my head and I have a patch right on the top at the front so there’s no hiding it.  It’s very visible.

The doctor told me the injections are not working; I have too many patches right now to have any more as there’s only so much they can do at one time.  As horrible as they were, they were something, and the small improvement they brought was always welcome while it lasted so it’s hard to hear that we’ve exhausted that option.  They want to try steroid tablets next, but I’ve been warned about potential side effects including weight gain.  That’s a whole other can of worms for me.  With my luck any potential side effects will come at me in full force and I’m not certain of my ability to cope with that.  And if I go for it and it doesn’t work, there won’t be much else to try, and that scares me.

I feel like the ugliest, most disgusting person in the world.  I feel weird. I feel like a freak.  I’m embarrassed and depressed.  I’m angry that this is happening to me and nobody can really tell me why.  I feel like someone really has it in for me – I was never full of confidence but apparently asthma and eczema and issues with my figure were not enough to be going on with.  I hate to leave the house most days because I feel too visible.  I live for the weekends when I can stay at home. 

Life feels very difficult because it all comes with so many considerations – where are we going, who will be there, how long will we be there for, what will the weather be doing, will it be windy?  Can I wear a hat or a headband or are we going somewhere that I’d be expected to take it off?  Are we staying overnight, if so where, with who, will I need to wash my hair in the morning, if so will I be able to take my own stuff or will the facilities there be good enough for me to feel comfortable, if I can’t wash it will it look ok?  It needs to be freshly washed for me to have the best chance of covering and making it so I'm comfortable.  Of course washing it often means I'm anxious about that too, because there's always the voice in the back of my head telling me that's not good for it either.  I can't win.

The smallest thing can make me anxious, I’m always worried about what people think, whether it seems like I’m making a fuss when I have to say no to something or cancel because almost everything is outside my comfort zone.  I don’t remember the last time I felt genuinely and wholeheartedly excited about something, I’m straight away thinking of all the above considerations.  I’m only comfortable with Paul, my handful of close friends and my family.  If there will be other people there, chances are I’m not going.  I'm so anxious if I have to see someone that I haven't done for a while because it's just really hard for me to have it on show.

To some extent these things have always been true for me as an introvert.  But my anxieties have been exacerbated no end by my hair loss.  I’m acutely aware that this has taken up nearly all my twenties so far.  When this all started I was 23 and when I look back all I see is the hair loss and tears, so many tears.  I’ve spent so much time crying.  I feel, honestly, like I’ve missed out on what should have been some of the best years of my life and I’m absolutely terrified at the thought of going into my thirties in a few years still feeling this way.

I know there are worse things in the world but hearing that doesn’t make it feel any better.  It’s not life threatening, but it’s not ‘just hair’ either.  It’s easy to say that if you haven’t been through it, I guess.  But to me it’s the difference between feeling attractive and comfortable in my own skin or feeling like the ugliest person in the world. It’s the difference between being on time for work or always being at least a few minutes late because I can’t bring myself to leave the house, even when I know I’m running behind, fixing and re-fixing until the very last minute.  I often leave on the brink of tears because I haven’t managed to arrange my hair in a way I’m comfortable with, but I have to go. 

It’s the difference between me going on my friend’s hen do next month and having to pull out because I can’t face being around so many people I don’t know all at once. It’s the difference between spontaneity and constant anxiety around anything out of the ordinary.  It’s the difference between appearing healthy, like I can look after myself, and looking scruffy and unkempt.  It’s not wanting to plan anything too far in advance because I don’t know how I’ll be feeling then.  It’s avoiding photos and automatically saying no to anything where people will be getting dressed up, because I don’t know if I’ll ever feel like doing that again.

It’s holding me back.  I can’t remember the last time I felt excited about having a wedding. There’s so much to be anxious about there and I feel like the worst fiancée In the world.  I’m convinced Paul should be with someone with fewer issues.  We could have started a family by now; the clock’s ticking but it doesn’t feel like the right time, while I’m dealing with this.  But I think about them all the time.  I have secret Pinterest boards full of plans and I know their names.  

I’m scared of waiting so long to feel better that eventually it will be too late.

I’m not incapable of functioning.   I’m so proud of myself for succeeding at work despite feeling like this and my colleagues have no idea, although they will have noticed the patches.  I do really try to keep my chin up and stay positive, and most days you would say I’m coping.  I've come back to this post two days after I started writing and reading back, I know that a lot of this sounds very dramatic and obviously my every day isn't like that.  But I'm leaving everything in, because this is how I feel when it's at its most raw and heavy.  It doesn't take much for me to get upset about it.  It’s always bubbling under the surface and it never goes completely out of my mind.

There will come a point when I need to decide whether it’s worth putting myself through any more treatment, but it’s not something I think I’ll ever be ready to accept.  I don’t want to make my peace with it, I want it to go away, and I don’t know how to convey the sense of despair and helplessness I get when I think about the possibility that it might not and I might feel this unhappy forever.

I can’t think how to end, apart from to say please be kind. Not just here but generally.  Everyone you meet is fighting a battle you know nothing about.

Thank you for reading.

Holly x

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