BITS AND BOBS (ITCHES AND SCRATCHES)
24th June 2013
Twice this week I have struggled to find a building in a posh part of London: despite my having the address both times I was scuppered beacause the edifices in question had no signage indicating that they were where they were supposed to be. The second was a recording studio where I was doing a voice over, but the first was a big old hotel/conference centre beset with lighting that was only permitted at ankle height and set to muted Electricity-Failing-Due-To-Zombie-Apocalypse low levels. The darkened elevators were augmented by TV screens with images of encroaching clouds – as if to say that the best way to comfort people about being indoors is to artificially create the ambiance that one might get rained on at any moment. All very modern, and very avant-garde, and all the result of some overpaid zeitgeist weaver with loads of outside-of-the-box ideas to brainstorm but very little involvement in the real world inhabited by people who are allergic to nonsense.
Anyway, I was there for a psoriasis roundtable convened by Forest Laboratories: they produce psoriasis cream Exorex. It’s a product I neither endorse nor disdain by the way, I mention it simply as a statement of fact. In my experience different creams work differently for different people. They laid on nifty sandwiches (no crusts, different coloured bread – it really is another universe) and a selection of teas and coffees. We didn’t so much as have to sing for our elevensies as talk about psoriasis for a bit. It was chaired by Martin Godfrey who had been a GP but then became a journalist, and he was very welcoming and full of enthusiasm. There were other GPs there, and representatives of Forest Laboratories and the PR firm organising the whole thing, but most of the talking was done by patients who for various reasons have some sort of profile in the world of skin (put that on your CV Toby!). So as well as me, they’d gathered Kate Shapland, beauty writer for The Telegraph and psoriasis sufferer for 5 years, Helen Hanrahan (aka blogger The Flaky Fashionista, 15 years stricken) and Victoria Fine from Psoriasence, who is lumbered with not only the skin problems that this dreadful blight causes, but the accompnaying arthritis too.
We told the assorted medicos of our experiences – much of what was said is the sort of stuff I have blogged about (I actually threw some jokes that I’ve written from here into the conversation as if I’d just thought of them – yes, I’m that desperate for approval). The meeting may result in some interesting initiatives – there’s talk of each of us writing a chapter for an e-book for example, and we’re all going to have a session with a professional photographer to get an image to accompany our writings.
What struck me the most during our discussions was Helen’s very positive attitude to psoriasis. There we were taking about the psychological impact of the condition and the treatments that have failed us and she said that as a sufferer she wouldn’t want to read about that because she knows it all: she lives with the bloody thing. She wants practical tips. Interestingly, Kate said that in terms of make-up and beauty there were very few; it’s an unattractive condition, difficult to cover up, and that’s that. Helen’s fashion blog takes the opposite approach – she writes about what glamorous clothes you can wear with the disease; a brilliant, positive way of writing that flies in the face of the sort of navel gazing often done it articles about living with a skin condition. Well, if she does gaze at her navel it’s only to see what colour garment would show it in the most flattering light.
All this positivity was coming from someone who is treated in Ireland and so not a beneficiary of the NHS. Her treatment costs her personally. And costs a lot. 48euro per Light Treatment I think she said, and the medicines and creams are very expensive. She once just spent a fortune on going alone on a sunny holiday because it cost as much as the creams she was being prescribed and had the same effect with none of the discomfort. When she broke down her expenditure it was eye watering: I couldn’t afford that kind of outlay which means that without the NHS I would be in agony and of no use to society whatsoever (not that I’m much use now, but you get my drift).
Talking to Helen and Victoria afterwards it struck me that the fact that my healthcare is free isn’t the only reason I should count myself lucky. In this image-obsessed and somewhat misogynist society, I think women with psoriasis are judged more harshly than men. Also, both of the ladies endured far more pain than I, I think. I have been very sore when an outbreak has occurred after a streptococcal throat infection, but my every day, vanilla psoriasis is, although unsightly and flaky, not generally especially painful. Helen has had periods of total deafness because the swinish thing can build up in her ears, whilst Victoria was once wheelchair bound with “huge cracks across my hand like someone had slashed it with a knife”.
Victoria is a very impressive young woman who has turned her plight into something positive – she is clearly very single-minded and able, and has built up her Psoriassence profile to the extent that she now has the ear of the drug companies and was recently a consultant on a Channel 4 programme about psoriasis that will be broadcast soon (I turned down the offer to appear in that, for various reasons – not controversial or exciting – I’ll go into another time). She has seized the condition and decided to take control of it to the extent that it has even become part of her livelihood. She had been a model, and psoriasis essentially put paid to that (told you it was harder for women) and yet she is unbowed, determined and very clued up. Impressive.
The three of us chatted away, united by the condition yet different in our attitudes to it – Victoria says there is barely a moment that she doesn’t think about it. Helen, on the other hand, tries to give it as little time as possible and is much more interested in sticking two fingers up and getting on with life. And both have managed to produce something worthwhile. Obviously I’m not someone who is at home on the catwalk but Helen’s blog is great, and she’s a terrific character. I asked what inspired her to write and she said that she’d looked online and all the writing about psoriasis was utterly miserable. She read that one in ten sufferers contemplate suicide – “it’s no bloody surprise if that’s all they have to read”. Oh, yes, she’s good value.
You’ll notice I have used the word “sufferer” a few times. That old chestnut raised its head again at the meeting. Do we object to being referred to as suffers? “No, we do suffer sometimes” said Helen. And she’s right: we don’t need to be protected from vocabulary. It was good to meet her, and Victoria, and I’d direct you to their sites:
Helen’s fantasticaly fashionable blog is here. She Tweets @FlakyFashnista.
Victoria’s brilliant Psoriasense website (lots of information about the condition – and merchandise too!) can be found here. She Tweets @Psoriasence.
Kate didn’t join us in the (inevitable) pub, but she can be found online writing about psoriasis here.