I started losing my hair when I was 20. I didn’t know it then, but I had Lupus.
Despite having many of the tell-tale signs and symptoms I was misdiagnosed until I was 46, when (following the death of my father, a house move and major surgery) my lupus took off in spectacular fashion and, additionally, I developed anti-phospholipid syndrome. Now I know many people who have Lupus-related alopecia find their hair recovers at least to some extent after they have got over a flare, but mine never did. For years I managed it by using scrunchy hairpieces wrapped around the scraggly bits I had left and tying boho scarfs around my head. I got the nickname ‘wacky grandma’ and loved it.
But following a couple more flares and several bouts of polymyalgia, this way of dealing with my hair loss became untenable. I simply didn’t have enough bits of hair left to hold the scrunchy in place. So, now it has to be wigs. During my bouts of lupus, I suffered from the rash on the crown of my head, and on the face too, especially in the summer. But people have said I look too well to have a serious illness – lupus can do that to you I found. But when I am poorly I go pale as a ghost and cannot function. I always say Lupus is a wonderful illness, in that I wake up in the morning and wonder what I will have to deal with today. It can change on a hairpin (joke). But I have not let all this stop me. I took up printmaking (even though the multi-connective tissue problems mean I cannot turn the press myself), and I carried on singing for as long as I could.
I get out and about albeit usually in a wheelchair or on crutches. I know I am not going to get better, but I can deal with the periods of ‘worse’ as long as I keep smiling and doing and loving.
So – wigs! I don’t like wearing wigs because they irritate my scalp, the protecting head-nets don’t stay on my head and sometimes neither do the wigs; also they’re expensive, the summer heat causes meltdown and I have trouble deciding what suits me. I’d love to say I am brave enough to go a bit wild in my old age, but I’m really not … I mean I’d love to be a redhead for a while (for example), but I think I’m too old for that much change!
BUT on the other hand, I love wearing wigs because they allow me to be more me, to give myself an identity, and because losing my hair has almost been harder than the constant pain, the fatigue, the limitations and so on. It’s part of the illness you can see. The rest is for me to put up with.
My hair is part of my personality but it isn’t all of it. Wearing a wig is not just about who I am but who I want to be on any given day. I still don’t like going ‘nude’, as it were because I think I look so much older and more haggard.
My husband is marvellous. He never lets me feel that I am not looking good and today’s wigs are very natural looking, so I can transition between greyer tones and darker rooted ones, shape, length… but it is the style that’s crucial. I suppose if I had a good wig outlet near me with lots of choices, I could go in and get better advice on how to choose, how to use, how to enjoy as I still feel I don’t know enough about certain issues. But in the meantime, I am not hiding the fact I wear wigs, I’m upfront about it – why not? I chop and change, suit the style to the outfit and make sure I’ve got lots of options. And I make use of internet shopping of course!
Love from,
Tricia
Well Tricia, you haven’t had an easy life!
Somehow, the difficulties that you have have faced, forged a wonderfully strong and resilient character. You come across as the friend that we would all like to have, especially the wig-wearers, who will admire your individuality, ingenuity (or ‘wackiness’) and general lust for life. You ‘just get on with it’ don’t you?
Most people try to enhance their appearance. When we wear wigs, we certainly are different to the majority. It is OK to be different, isn’t it?
You seem to be a work in progress. Keep on developing the wonderful you…
I kind of know how you feel, I have lupus hair loss, body, eyebrows and most of my head, I get up put on a wig, every day, as otherwise I look like a Neanderthal. My husband thinks I look great in wigs, so I am happy, and they don’t cost any more than many people spend at hairdressers, thanks to simply wigs.
You’ve been through the mill with your hair loss and Lupus Tricia and now you’re in a wheelchair
I take my hat off to the phylosophical approach you take with life and the way you’ve adapted.
Having a supported husband has clearly been good for you too
Good luck with the rest of things
Ps love the wig you’re wearing by the way xx
Thankyou for this wonderful expose. I don’t have Lupus but I go along with everything else. You don’t mention toppers but maybe you don’t have enough hair to attach them to. Whatever. Good on you! You give us all confidence