Apologies for being a little absent, recently. There’s been a bit going on. The AS has been in overdrive, since my two-week stint in hospital late last summer, (I never realised a flare could last so very long). Since being diagnosed, in 2005, I thought I had experienced every possible permutation of passenger that the disease could drag along for the journey (Uveitis, Colitis, Peripheral Joint Disease). I was wrong.
Late last year, I started to receive four-hourly, Inflectra Anti-Tnf infusions in hospital every eight weeks. And then I noticed that I was losing more hair in the shower (and, trust me, I really didn’t have much to spare). Patches and gaps appeared, until I had no choice but to get it cropped. The loss continued. I had decisions to make – I could either put up with it, and continue to lose what confidence I had or I could do something about it. So, one Sunday afternoon, my sister-in-law shaved all of what was left right off. Oh. My. Life. I looked like Mrs Potatohead. I laughed, and after my sister-in-law had left and it was just me and the cat, I cried.
For a while before the worst of the hair loss began, a couple of friends had noticed that my hair had been getting thinner and suggested I might want to think about a really good wig – ‘just for social occasions’, to give me a bit of oomph. I laughed it off. But now, as I sat around in the bamboo beanies I had ordered online, I knew that I had faced the point where I had to make some decisions. I could either sit around, afraid to go out in case I was stared at, or I could woman-up and take some control back.
I made an appointment with a salon that I found via Google. The reviews looked good, so off I went. I was a wreck. The owner seemed lovely, very helpful, and the stylist that looked after me was great. They told me I was lucky they had a quiet afternoon and I could try on styles until we found the right one. The problem was that every style we tried was just wrong: the caps were too big, the colours were wrong, the caps were thick and itchy and the styles were not what I wanted. Yes, I took a long time trying styles on. Finally, the owner suggested they order a couple of hand-tied, monofilament capped styles from Europe. They said it would be a couple of days before they arrived.
Two weeks later, I went back to the salon with my friend and tried on the three fibre wigs they had ordered for me. The one I really liked, that looked most realistic, was the one I was about to buy…until the stylist whispered that I should ask the owner how much it was, first. This was the point when the owner, who had been so nice to me previously, started to get more and more snappy with me. She wanted £499 for the wig. I nearly choked. I asked about the price of the other two – the cheapest one would cost me just over £300. We put it on, played around with it and the stylist said she could cut into it for me to make it exactly right. I dithered. I wasn’t sure. Then the owner appeared in the doorway, arms folded, with a face like thunder and suggested I should not waste their time any longer and make a decision ‘particularly if you want us to cut it for you, as well.’
The stylist leaned in when her boss had gone into the kitchen to make tea, (or stir her cauldron, take a valium or whatever) and told me that she didn’t think the wig was worth it – she was mortified at the other woman’s behaviour. I was acutely embarrassed and so very desperate to have hair on my head that I told her to please cut it and get me out of there. I handed over my credit card on my way out but what I should have done, in hindsight, was tell this cruel, uncaring woman where to stick her overpriced wigs and woeful customer service. But I didn’t. I was too emotionally fragile to say a word.
At home, I closed my front door behind me, and cried. Again. And then I poured myself a large glass of wine and got my iPad out. Surely this kind of service wasn’t the norm? Surely women suffering the trauma of hair loss through cancer or alopecia, or whatever, weren’t usually subjected to this kind of nonsense? And then I looked at the online price of the wig I had just been bullied into buying – I had paid over £150 more than I should have. I looked at myself in the mirror – the wig aged me by a good five years. Oh, man. This was when I got angry. I couldn’t do anything about my experience, but I if I was facing a lifetime of wig-wearing, I sure as hell wasn’t going to be treated like that again.
And that was when I started researching online, and I discovered that the internet gave me worldwide access to really lovely wig-wearing women who went out of their way to review the best – and worst – in wigs and headwear. I discovered Patti’s Pearls first, and found myself roaring with laughter at this warrior of a women who talks about ‘shaking the tar’ out of wigs and showing us how to make them work for us. Then, in the UK, I found the inspirational Michelle Moffatt who is absolutely brilliant at giving the pros and cons for each piece she reviews. Her enthusiasm is infectious.
Listening to these women, and hearing their wisdom and the way they have dealt with hair loss inspired me to take a chance and order some wigs online instead of putting myself though the wringer at a salon, ever again. So, I contacted these lovely people and ordered a couple of styles that I had seen reviewed. And wow, am I glad I did. Not only do I have the confidence to step outside and not think the world is judging me for not having hair but I find myself getting the odd admiring glance. A couple of weeks back, I was wearing Ellen Wille’s Flip Mono in Pearl Blonde Rooted at the optician’s, and a hairdresser complimented me on my lovely hair. I thanked her, leaned across and told her it was a wig. I thought she was going to fall off her chair. She asked where I got my hair from, and I wrote the website address out for her. That’s the other thing – I have been given the confidence to not only wear these styles, but I am no longer ashamed to admit that I’m wearing a wig. I am embracing it, loving the admiring glances I get. I’ve just taken delivery of this little beauty which I got for my friend’s daughter’s wedding this coming weekend, and I have been amazed at the compliments I’ve received about it, already. I have better hair than I’ve had in years! I’m not going to look back, now that I have the freedom to wear whatever I like, funds permitting.
I don’t mind admitting that illness has taken me to some fairly dark places, and of course I know that it’s only hair, but it has had a huge impact on my mood and how I feel when I get up in the morning. I might be in constant pain and spend a lot of time at home, but I can put on some fabulous hair and look pretty good for someone who doesn’t get around too well.
And you remember that first wig that I got from the awful salon? I donated it to a local cancer centre. At least something good came from the experience.
Jayney rambles... 