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So why does it matter?
So my hair at the front and sides has gradually - oh so gradually - disappeared. And my hairbrush is forever having to be stripped bare. And for the first time in my life I have to use hairspray, just to hold down the carefully arranged styling to cover the seeming acres of flesh. Why does it matter? I am still the same person. I am 64, not young and needing to prove a thing. Who looks at older women in any case? We are universally invisible. So why should I care?
But I do. I care enormously. I would never have thought it mattered so very much. I feel as if everyone 'knows'. I don't want to go out in the wind, and I certainly don't want to go on the fast rides at theme parks, which is where, three years ago I had my first inkling of there being something wrong. I just feel less of a person, less of a woman. Me! My friends and family would laugh in astonishment - me, the strong one, the feminist, the successful professional. Yes. Me.
Over two years ago I went to the GP as my eyebrows were falling out. He did, admittedly, do blood tests, but then told me it was 'old age'. Thanks. I then just plodded on, feeling inwardly highly self-conscious, furtively checking how much further my hair had receded, and never saying a word to anyone. But then, six months ago the lichen planus that has plagued my life on and off for years, reared its ugly head again. This time, rather than get nowhere with my GP I went to the Dove Clinic to the wonderful Dr Julian Kenyon. And he confirmed what I had always thought - that the digestive problems that had led to hospitalisation and totally fruitless tests, were indeed linked to the oral lichen planus I also suffered from. And to the hair loss. Yes - frontal fibrosing alopecia, which is absolutely linked. Hard not to feel bitter about the 'old age' diagnosis (and the 'nothing we can do' in relation to the digestion agonies, with suggestions of it all being psychosomatic), even if there was nothing the GP or anyone could have done.
Julian got me back on track in relation to the lichen planus, but the hair has gone forever.
And then, yesterday, my 8 year old grandson commmented about how I looked as if I were going bald. It was like a bucket of cold water thrown over me.
So, now I am going to do something about it. I am going to bite the bullet, spend the money and look at Interlace - a sort of weave that picks up your own hair and adds more.
And I joined this group. Admit it Denise, you have a problem. A problem that is not life-threatening, that is not serious in any real sense, just serious to how I feel. So do something about it.
There. First step to feeling better about it!
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Comment by Tallgirl on June 13, 2015 at 7:23pm
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I go to where I can GAIN power: Having instant nice hair style in a minute, owning wigs of several colors and styles when my old schoolmates over 60 are now getting wire-like gray hairs that stick out everywhere or do not hold up for hours, having the freedom to change it up and color-coordinate or opt for the wig to fit the event, and getting those make-up stylists to teach me new tricks to enhance my eyes and brows. The diet also helped. There are more ways to gain power in life than washing hair strands while bending over a sink, or curling hair with irons or rollers. Job, friends, music, garden, cooking, art...anything you CAN control and to show your talents! The make-up and wig allows me to blend in so that ONLY my talents and skills shine...
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Comment by DeniseC on June 14, 2015 at 5:37am
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Totally agree. And clearly you have loads of those talents and skills. As do I. And always have (no false modesty here!). Which is why my own response to the alopecia so surprised me. I know what I would have told someone else - how much I would have emphasised the 'do something about it' but 'don't let it dominate', yet it seemed to eat away at me. Secretly, as I, for some obscure reason, felt ashamed. Complex beings, aren't we?
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I think a lot of gals only try one thing
And then get sad or give up if that one thing does not bring hsor, love, job, whatever instantly. I say
Try TEN new strategies, outings,
fashion changes, do more with friends, give it a few months, and THEN reassess the emotions. Your mixture of changes will baffle others, with some positive comments resulting to perk up your confidence. Then, change even more things about yourself to create a multi-dimensional wonder instead of a sad-sack. Then, when one thing goes wrong, you have all those 19 or more other positives to consider. A bigger 'bank' of prideful attributes can save you!
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Due to my fat fingers on tiny cell phone keys
hsor (above) should read HAIR!
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You made me smile.I am sat at my lap top with my beautiful almost-two-year-old granddaughter, and to her I am absolutely perfect. And that is much more important.
I am going to adopt your approach - TEN new strategies, outings, etc.
Enjoy today. Here in Brighton it is cloudy, but not so cloudy that Layla and I cannot go down to the sea and paddle. Yeay!
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You have to keep being positive, and realise that life is still wonderful, and lots of people have to overcome worse things!
I am pretty devastated by my own FFA, and it is something that I think about too much of the time. I have gone down the route of hairpieces, as I really don't think that many of the medications work, and at the end of the day I just wanted to regain my self confidence, be able to go out on a windy day, and not have people look at me, or ask me if I was having cancer treatment - as happened.
I still cannot understand why it developed - all my other family members have normal hair, it just seems to be me!
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Hi Pam
it was very interesting to read my own post from over a year ago ... things have changed for me so much since then. As you may have read in other threads on this forum, four months ago now I bit the bullet and got an intralace system fitted (Lucinda Ellory Clinic - HIGHLY recommended, but not cheap).
So now I feel 'me' again, and, ironically, in having hair again, and stopping being obsessed by the wind, photos and so on, I have accepted the condition and can talk about it far more easily. It is bad luck, and a horrible thing to have, but it isn't anything to be ashamed of and, as you say, there are far, far worse things we could have.
If you haven't followed other threads, one thing that really interests me is the possible link between FFA and sunscreen. Initially I thought that simply didn't apply to me, but now I am beginning to think it might - not from sunscreen lotion, but moisturiser with sunscreen chemicals in it. So I have stopped using it and now am trying out different natural products as alternatives. But, ultimately, who knows? As with you, no one else in my family has it (and I have two sisters more or less the same age as me).
I have found my solution - it isn't cheap, as I say, and it is dependent on going back to the clinic (in London, but there are others in the UK and in LA and New York, with plans for for more in the USA I believe) every six weeks to have the intralace tightened as my own hair grows. But I am so pleased with it.
Stay positive!!!
Denise
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