Saturday, 26 October 2013
RIP, Mane: Alopecia Arreata and Me
Today, I finally had an appointment I've been mired in an eighteen month battle with my GP, medical secretaries and NHS booking lines for. It was with a dermatology consultant, regarding the hair loss that has slowing been chipping away at my self esteem, sense of identity and confidence. (Hence no beauty or fashion posts from me for a long, long time).
It confirmed what I already know: that I have severe alopecia arreata, a little understood, barely researched and underfunded condition where (it is believed) that my immune system has attacked my hair follicles, meaning that I have now got large clumps of bald areas all over my head, as well as complete loss of all arm and leg hair (I never thought I'd miss that stuff, but I do, I really do). Along with the physical symptoms, the unknowability of it, and the fact that it affects a part of your appearance crucial to most people's sense of their selves (recall your last bad haircut, or even bad hair day, and think about how it made you feel), it's been fairly harrowing. Every morning, waking up and brushing out the knots caused by hairs detaching themselves overnight, looking down into the sink and seeing a mass of blackness, stomach sinking. Every day, artfully arranging remaining strands to try to cover the bald patches, only to realise in precious photos of me with Roshan that it didn't hide anything whatsoever. Slowly chopping my once waist length hair shorter and shorter in order to lessen the daily strain of witnessing the sheer masses I'm losing. Tears, so many, many tears.
I'll be the first to admit it: I've always been really vain about my hair. I was blessed with a thick, unruly mane, and since the age of fifteen, there's probably only been two or three (accidental scissor-happy hairdresser related) incidences of me having even mid-length hair. It's always been long, it's always been very thick.
But now I'm facing the prospect of it never returning - I have a 1 in 10 chance of a full recovery. And that's very, very hard to take. The problem with alopecia is that you never feel like you have the right to be really upset about it - most people (with the best will in the world) keep reminding me that I could have it so much worse, that it's only hair. But as I await a wig-fitting appointment, I'm struggling to put a brave face on this. I miss my hair. I just don't feel pretty without it.
As traumatic as it has been, the process to even get the appointment confirming my diagnosis has almost been as stressful. After seeing doctor after doctor at my surgery who dismissed my concerns ("there's nothing to be done, sweetie", "it's probably just stress, relax and it'll come back", "it's your pregnancy" - the last completely illogical given it began before I was even pregnant), I finally hit upon one that actually listened to me and agreed to refer me. That was in July. A month later I finally received an appointment - for December. Ringing the dermatology department, I was told that was simply the earliest appointment they had. My GP was outraged (finally found a good one, there) and immediately expedited my referral as urgent. Since then, I've been engaged in a merry (read: not merry AT ALL) dance with rude, huffing medical secretaries who jobshare and don't speak to each other, a bookings department that doesn't ever seem to be able to receive a fax, and GP secretaries who promise to fax things and then don't. It's been hell. I simply do not understand why it has to be this way - the NHS must be the only organisation still running predominantly through faxes (how many of us when on work experience many moons ago used to feel a little ill when handed a bundle of documents and phone numbers, knowing hours of frustration and earpiercing whistles of fax-sendings, or rather, failings, awaited?) Why can't emails suffice? Surely they're more secure, efficient and easy than bits of paper flapping about for anyone to see or intercept?
So after two months of phoning almost every day, I finally got given an appointment for this morning - I think in part because the bookings line manager understood that sheer incompetence had ensued. But again, another harrowing experience awaited me, as the very sympathetic, but entirely helpless consultant informed me there's very little treatment that works, and that the NHS doesn't fund much research into this area because failure is so high. This strikes me as a deeply flawed logic, a horrible catch-22 for anyone suffering from a condition that has been deemed a waste of NHS time. Perhaps I'm not very, very physically unwell - but the emotional impact of losing all your hair as a 34 year old woman is - well, I can't even put it into words. And here, I've really tried.
But I'm considering my options. I've never been able to do fancy 1940s hairstyles, so I've treated myself to this number in order to vintage-up my style. The bonus of having jet-black hair is that it's easy to choose wigs and know that it won't look too fake. I've been using hairbands and braided false hair-headbands, but now it's getting a bit too bad for that, but they've been invaluable and I think will also look nice with wigs. I might venture into the world of coloured hair, which I've always been tempted by, but never had the courage to do. I'm awaiting steroid injections to the scalp (fun!) and my consultant and my sister are looking into research trials I might be able to join. Who knows, I might be that one in the ten who's lucky. But I can't hide away forever and I can't sob my life away if not. So I'm going back to posting beauty and fashion - and my face - here, even if I might look a little different to how I used to.