I’ve thought long and hard about writing this post. I figure some things are best kept private – in an era where it is the norm to over-share personal information, I have always believed that you have the right to maintain some privacy.
However, since I am probably not going to be able to keep this quiet for much longer – you will see why shortly – maybe, just maybe, my problems can help someone else who is going through the same thing.
So, my secret? I’m bald. Not just going a little thin, or receding, but full-on Friar Tuck halo kind of bald. And it will never grow back.
I have Lichen Planus Pilaris – an auto-immune disease which kills off both the hair follicle and the stem cell, meaning that, unlike many forms of alopecia, it will never grow back.
While this is not life-threatening, it is certainly life-changing. I have been wearing hair toppers for around four years – these aren’t full wigs, but they clip on to existing hair to cover up the bald patches and thinning hair.
They have the added bonus of being lighter and less restricting than full wigs, but it does mean that the colour and length has to match the hair you have left.
Life-changing? Yes, it is. Going on holiday and swimming became a nightmare. Do you take it off, wear a headscarf or a swimming cap?
How do you cover up when the weather is really hot? Wigs and toppers are quite warm. Also, depending on what kind you have, some of the covering right on top of the head is very thin, to mimic a normal scalp, meaning that it may burn the top of your head.
And in winter, when you cover up with a pompom hat, the skin becomes itchy, and if you have a fringe (bangs) as I do, it pushes it into your eyes.
Of course, you don’t want to look as if you’re wearing a wig, so looking as natural as possible is important. I’ve made hundreds of pounds worth of mistakes buying wigs, which, naturally, come in all shapes and sizes.
Some of them have made it look as if I’m wearing a large helmet, while others have had hair that is too short, too long or the wrong colour for my skin tone.
I am talking about this now for two reasons. One, I have told only my closest friends about my condition, and a couple of them have shared that their hair is starting to recede at the temples.
Secondly, although I currently wear a topper clipped to what’s left of my own hair, there will soon be nothing left to clip to, which means, it will become apparent that I have to wear a wig.
Alopecia Just Means Hair Loss
There are many different types of alopecia. From what I have read, the most common forms are alopecia totalis, alopecia areata and of course, alopecia caused by illness or medication – including some treatments for cancer. If it is the latter, is does tend to grow back, though not necessarily the same as before.
Lichen Planus is one of the rarer forms and is also known as Ciatricial (or scarring) Alopecia. There is also male/female pattern baldness (Androgenic Alopecia), Alopecia Universalis and Traction Alopecia.
The Cause of Hair Loss Is Unknown
The cause of alopecia is largely unknown, though there are various theories – severe trauma, stress and history of hair loss have often been blamed, along with lack of vitamins. One hospital consultant even went so far as to say that Lichen Planus did not exist until the early 90s.
He explained it became prevalent in Australia following the “Slip, Slop, Slap” campaign, leading some to believe that the chemicals in certain sunscreens triggered the auto-immune disease to protect the body. He believed that products and the environment played a part in this kind of alopecia.
Since I have never had strong hair, and still spent years dyeing, perming, curling and straightening my hair, there is a possibility I overdid things. We will never know, though – maybe I was just pre-disposed to losing my hair from something in my genes.
The psychological issue is really the one which causes most distress. Initially, I took several different drugs to try and halt the spread of the hair loss in the early days. Unfortunately, many had toxic side effects, and ultimately, they did not slow down the hair loss, let alone stop it.
When I told my consultant I didn’t want to continue treatments, he admitted that they rarely work in cases such as mine.
I should also point out that this is not a particularly sexy subject, and since it is not life-threatening, research into causes and cures has been sporadic. In fact, there has been very little progress in several years.
The Social Side of Alopecia
Although I have pretty much kept this to myself, I had to tell my best female friend since we sometimes take mini-holidays together and sharing a room becomes even more personal.
She once remarked that she thought I had accepted it really well. The truth is, I will never accept it. All I have managed to do is cope with it. But come night-time, when I’m getting ready for bed, I feel especially vulnerable, and yes, ugly!
My husband has told me it makes absolutely no difference to who I am, and that he loves me anyway. But looking in the mirror and seeing what is staring back at me can be immensely distressing.
I know this is a common feeling. One of my fellow sufferers once admitted she wore her wig to bed for many years so her partner never saw her without her hair ‘on’.
The Cost Isn’t Just Emotional
If you’re in the UK, the NHS will probably allow two synthetic wigs a year on prescription (these cost around £70 each, even for those over 60), but entitlement may vary between health authorities, so do check before taking my word for it.
If you buy privately, the cost of a wig can vary from just a few pounds for a synthetic wig to several thousand pounds for a custom-made real hair wig. Quality varies considerably and since there is a whole industry on different methods of making wigs, I don’t propose to go into detail here.
So, the time will come, very soon, when I will have to wear a full wig. I have made the decision that if I am going to go public and wear a wig in the future, I will change my hair colour and length to suit my mood and wardrobe!
I already have longer and shorter wigs lined up, and I’ve just received a pink one – since that’s my favourite colour.
I am currently working with a milliner to try and design some pretty headwear to wear at those times when I need to take off my wig – perhaps something with detachable trimmings to mix and match an outfit or occasion, since the turbans I have seen to-date are pretty boring.
Please don’t ask me any medical questions. If you are losing your hair, do go and visit your GP or medical practitioner – they are the best ones to diagnose and give advice on treatments. But if you have hair loss stories, please share them – I hope it will help others.
I regularly go to my local Alopecia support group in the UK which can give practical help and support, but they are not doctors – just people like me who have made the most of their distressing situation.
Also, please do remember that we are all individuals and what works for some doesn’t necessarily work for everyone. You are not alone. I cried buckets in the early days, but ultimately, I believe you just have to get on with it and find something that works for you.
Have you suffered hair loss? How have you coped? What treatment have you had? Have you found any pretty headwear you would like to share?