Over the last three years, I have lost and regrown my hair. I donít know why it fell out, why it grew back or if it will disappear again. I am the 1 person in 100 with alopecia, an unpredictable and often untreatable condition. For me, the onset and eventual recovery was gradual; for others, their hair can fall out over the course of a few short weeks or months. For some, their hair never grows back. Its very unpredictability was, I found, the most unsettling thing about alopecia.
Lots of people think alopecia is caused or at least triggered by stress, so take this as advance warning that people may assume this to be the case for you. I found this quite frustrating as I was feeling fine until my hair started falling out! In truth, no one knows for sure what causes alopecia. That was hard for me, partly because I like knowing stuff, particularly when it's happening to my body, but more so because it makes it difficult to know what to expect.
Though it has no impact on your wider physical health, alopecia can certainly affect your self-image. Iíve never considered myself to be particularly vain or defined by my appearance but I found it hard to feel attractive as I pulled out clumps of hair in the shower or surveyed an increasingly bald head in the mirror. It was tough enough to deal with at 27 and with a supportive, long term boyfriend; I imagine it would be a lot harder as a single woman or man in their early twenties, a common age at which to develop alopecia.
There are lots of potential treatments that you can try for alopecia. Unfortunately, none are certain to work and most carry the risk of side effects with various degrees of severity. Itís really up to each individual what they feel comfortable with. I gave two skin creams a go (Dermovate and Protopic) but didnít feel comfortable with the risks associated with more invasive options. My experience of these two creams was neutral; I didnít experience a positive change in my condition but nor did I suffer from any significant side effects. After a year or so, I just got fed up of slathering them on my head every morning and evening, particularly slimy Protopic (top tip: use at night and wash your hair each morning), and gave up using them.
Given that my general physical health was fine, I didnít want to step up to anything that acted below the skin. In particular, I wasnít keen to either inject or ingest steroids. The former option can stimulate growth from targeted hair follicles and apparently can work well for those with very local hair loss. I had relatively widespread alopecia and didnít fancy developing "tufty" regrowth akin to Sonic the Hedgehog or risking local scarring, in case I wanted to rock a bald head in future. The latter option can give good, at least short term, regrowth but comes with a long list of potential side effects that, for me, felt out of proportion with the condition that I was aiming to treat. The risk profile of ultraviolet light therapy, which can increase your chance of developing skin cancer, also felt out of kilter to me.
There came a time about 18 months ago when, with my scalp stubbornly refusing to respond to treatment, I realised that I needed to get a wig. It was an emotional decision and a surreal experience. I discretely slipped out of work (only my boss was in on the plan) and to a local shop that catered for chemo patients, transvestites and those with alopecia. The range of options was daunting but, thanks to the ownerís empathy and gentle guidance and my boyfriendís support and advice, I finally decided on my new look, a sleek chestnut bob. Wig and polystyrene head in bag, I returned to the office and, when a colleague asked where Iíd been, I answered truthfully. I donít think it was the answer he expected and I must confess to an internal chuckle at his shocked face!
In some ways, my wig was my life saver. Many people didnít even realise that it wasnít my real hair (though some initially examined me with confused, quizzical looks!) and, even for those in the know, it was something of a hit. However, for all that it was chic; it was tough to get used to. For the first few weeks, I alternately pulled it too far forward and let it drift too far back; in all, my hairline was rather confusing. And it itched terribly; I have more sympathy now than I could ever have imagined possible with Roald Dahlís witches. It also made me feel claustrophobic, particularly on a warm day when feeling under the weather. But worst of all, it felt like an admission of defeat; an acceptance that my hairlessness was now the status quo.
Behind closed doors, my natural hair continued to get worse but then, for whatever reason, it started to improve. There were setbacks as new bald patches developed Ė one of which I found after a few pints at a beer festival, causing me to burst unceremoniously into tears in the ladiesí loos on the phone to my mum Ė but, little by little, things got better. Nine months after getting my first wig, I went to see my childhood hairdresser and asked him to do what he could with my uneven, rather straggly locks. I emerged from his salon with a very short but quite stylish crop that miraculously concealed the still bald bits of scalp - thank you Leon! I could hardly believe that I was back to ďwearingĒ my own hair and couldnít stop running my fingers through it for at least the first fortnight. Though my condition continues to improve, I have my trusty wig tucked away just in case; as at the onset of my alopecia, thereís no way of knowing the prognosis from here.
Through all this, though my boyfriend and family have been amazing, my experience of the medical establishment has, unfortunately, been as patchy as the condition itself. It seemed to me that the first GP I saw thought I was wasting her time, whilst the second, who initially eyed me cynically, recoiled as I parted my remaining (well arranged) locks and exclaimed that, yes, I really had lost a lot of hair. Tell me something I donít already know! It took a third consultation with a third GP, twelve-plus months into my hair loss, before I was asked how I was feeling. I nearly cried; OK, in truth, I did cry. This GP both referred me to a dermatologist and gave me a high level sense of the range of options that they might present me with. I felt back on track.
Unfortunately, my first consultant derailed me by treating me more like a specimen than a person, conducting an examination of my head literally from on high, flanked by an entourage of students. There was no apparent concern for my feelings and Ė presented with a shopping list of options rather than a considered opinion - I left feeling confused as to what to do next. Fortunately, my second consultant showed rather more empathy (and arranged an NHS wig prescription for me), while my doctor parents were able to sympathetically ensure that my eyes remained open to the vagaries of alopecia whilst supporting me through the rather frustrating treatment process.
Iíve also been lucky to know two other people with alopecia, whose practical advice and support were invaluable. For both, the process of losing their hair had been unsettling and upsetting and, hearing this, made me feel less ashamed that I too had experienced days of feeling ugly, frustrated and depressed.
When I first developed alopecia, I didnít know how to feel or what to do. For such a common condition that can really hit your self-confidence, its profile both online and within the medical community feels pretty low. For whatever reason, I did not come across Alopecia UK during the worst times but wish that I had. Iíd encourage anyone who has had alopecia to speak up about their experiences, both bad and good, to help both those going through it - and the family, friends, doctors and hairdressers supporting them - better deal with its uncertainty and unpredictability. Itís not easy to tell your story - this is the fourth version that Iíve written and the first Iíve actually put out there for public consumption - but I hope mine proves helpful in some small way.