Beczema interview on Eczema Blues

A while back I was invited to be interviewed for the spectacularly comprehensive eczema resource blog Eczema Blues. Eczema Blues is written and compiled by Marcie’s mum, who gave up her job to care for her daughter after she developed the particularly severe skin condition at the age of two weeks. I’ve pasted it below but please do see the post in full at Eczema Blues.

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Eczema Blues: Hi Rebecca, thanks so much for taking part in my Friday blog series ‘Someone has Eczema’! Let’s start with you sharing a little of your eczema history, when did you get eczema? 

Rebecca: Hi Mei, thanks so much for asking me to contribute.

I have actually had eczema all of my life and I can honestly say that, now I am in my 40s, I am finally coming to terms with it. But, I think that 40 years is far too long for anyone to spend in crisis about a skin condition. Yes, it can be physically debilitating at times, but mostly our lack of self confidence as eczema sufferers is related to a perception of how we think we look – so I started the Beczema blog in the hope that I can go some way to changing the way fellow eczema sufferers think and feel about going out into the world.

My eczema has not always been severe. I have had months where you would not even know I had it, but then it hits me out of the blue and really takes hold. When I was a child, it was mostly located in the usual spots – inside of elbows, backs of knees, feet – but also some very visible patches around my mouth and eyes. In recent years, it has struck my face more than it has anywhere else.

Eczema Blues: Share with us the visibility of your eczema: Is the eczema in patches, lesions or visibly apparent?

Rebecca: These days my eczema affects mostly my face. Flare-ups usually begin with intense itching, swelling and the appearance of random hives. Then it gradually worsens as the days go on, the swelling becomes more pronounced, deep creases develop around my eyes and my skin dries out to such an extent that it becomes visibly flaky, red and very sore.

Then my skin will crack – which is the painful part – sometimes making it very difficult and painful to even smile. Which is something I have had to teach myself to do even when I am feeling at my lowest.

Eczema Blues: How did your eczema affect your self-confidence?

Rebecca: During my school and university years my eczema was probably the biggest cause of anxiety for me. At school, I was called ‘porridge face’ and ‘E.T.’! Then in later years when friends all started using make-up, I was well and truly left behind. I couldn’t use anything on my skin except the big pot of white grease as prescribed by the doctor.

I think kids are actually much kinder these days; they seem to have a respect for others and a perception of people’s differences that seemed to pass people by completely in the 1970s. But, even so, the emphasis on appearance seems to have been heightened considerably in recent years – perhaps because we are ‘mis-sold’ an ideal of the perfect body by the media? The link between looking good and feeling good certainly seems to have taken hold.

According to a report in the UK, 60% of people have at one time or another felt ashamed of the way they look – and these are people with perfectly healthy skin. So, who can blame sufferers of eczema for wanting to hide away from the world. If folk with lovely stretchy, elastic, non flaky, non red skin are hiding themselves away because they don’t live up to the ideal – then, frankly eczema sufferers have a much better excuse.

Except, there is plenty of evidence to suggest that by withdrawing from the world, you are stirring up eczema symptoms and creating a situation for yourself  whereby your condition is likely to get  worse.

Two dermatologists from the US, Dr Richard Fried and Dr Fran Cook-Bolden have looked closely at the ‘Skin-Mind’ connection in the treatment of eczema. They have evidence that patients with eczema actually get worse when they are under times of depression or anxiety.

Not surprising to any of us who have had the inevitable eczema flare-ups around exam time, interviews, wedding days! But, while a withdrawal from public life might seem like the most comfortable option during really bad bouts of eczema, the sense of isolation that results from hiding away can contribute significantly to longer term depression.

The self-perpetuating viscous cycle that exists between skin and negative emotional states is a real problem and one that, if you can tackle and overcome to some degree can actually help and improve your eczema symptoms.

It has taken me nearly 40 years to get there myself and I know that it takes a massive effort to be confident with problem skin – lots of talking to yourself into things that you find uncomfortable.

But, take it from me, the pay-off is huge. I don’t know what my face will look like when I wake up in the morning, some days it’s fine but some days it looks like I’ve been stung by a swarm of bees and been given a chemical peel during the course of the night.  But, one thing I can guarantee is that at least one day out of seven, I’m not going to look good.

So, after decades of hiding I have made a huge effort to break that link between looking/feeling good.

Eczema Blues: One final question – How is your confidence now and how has this journey changed your view of yourself?

Rebecca: I would love to say that I have totally tackled and completely conquered my lack of self-esteem and confidence as a result of my facial eczema, but the truth is – it is a daily battle.

If I am honest, I have to give myself a pep talk before any public events when my eczema is at its worst. For example, this weekend I had a party to go to – a garden party in the middle of the grass-pollen season! Naturally, my skin allergies and resulting eczema showed up right on cue. My skin was angry, red, and unbelievably itchy.

But, I put my best foot forward. Put a smile on my face and introduced myself to lots of new people – asked them questions about their lives and totally ignored the elephant in the room (well, the garden).  And it worked. I didn’t allow myself to hide away in a corner like I might have done some years ago or make excuses for the state of my skin, I didn’t let it rule my life. Not only did the satisfaction from winning that particular battle feel amazing – I had a great time!

Eczema Blues: Thanks Rebecca for taking time to share your personal story.

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Eczema skin care routine

I have been inspired by two women recently to devise and stick to a proper facial skin care routine i.e. not just slapping on a load of emollient over a dirty face. Soap and cleansers always dried me out or aggravated my skin so water was about the harshest cleanser I would subject my face to – and in truth only if I could be bothered at the end of the day. Using that particular skin-care ‘routine’ – the first picture was how I ended up looking a lot of the time – and the second is a good skin day following a new routine and with no flare-ups.

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I google eczema and eczema skin care almost to the point of obsession and in the process I stumbled across the inspirational Dr Cook-Bolden, Assistant Clinical Professor of Dermatology at Columbia University (you should really read what she has to say about the skin-mind connection here). This is what she has said about eczema and skin-care:

“Proper cleansing and moisturizing is vital in terms of healing. You really have to partner your traditional medical therapy of atopic dermatitis and psoriasis with the proper skin care, and that is key in maintaining that barrier not only in psoriasis or atopic dermatitis but also in acne and rosacea. It’s really very key in the whole process.”

Oops, OK – rumbled.

She goes on to say that cleansing removes dirt, of course, but also any possible irritants that if left on your skin may cause a reaction. But it’s the moisturisers where she really dishes the Doctor scoop:

“When you look at the different types of moisturizers, you’ll find humectants, you’ll find occlusives, and you’ll find emollients. Your humectants are the ones that attract the moisture and help to keep it there. The occlusives really focus on helping the skin barrier, providing another barrier, and things like petrolatum are great occlusives. When you talk about humectants, you’re looking at ingredients such as alpha-hydroxy acids, glycerol, and hyaluronic acid. When we use the term emollients, that’s a term I’m sure even we use interchangeably with moisturizers. Emollients really describe the types of moisturizers that soothe and calm the skin as well as provide some sort of barrier function.”

Humectants, occlusives, emollients. Oh my! But where to start?

I have been using Aveeno for years. But lately, it really wasn’t hydrating deeply enough. I have already blogged about Pure Potions Skin Salvation, which has really helped calm my skin and to keep it from drying out, but it’s not really the kind of moisturiser you’d like to work in to your face twice a day as part of a facial skin care routine – it’s just too thick and heavy.

At the beginning of this post I mentioned two inspirational women – the other being Sali Hughes, the Guardian beauty columnist and author of Pretty Honest: The Straight-Talking Beauty Companion.

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In my last post I admittedly had a bit of a rant about her notion of the look good/feel good connection but ultimately I think she’s got an amazing understanding of skin and the book has been a great help to me in getting to grips with the efficacy and potential effects of the thousands of skin care ingredients included in the millions of available skin products.

In one very poignant section of her book she discusses the kinds of emollients and creams you are likely to be prescribed by the doctor for cleansing and moisturising:

Having been on the receiving end of many of these prescription creams for many years, I will say that I find them less effective than great-quality creams made by non-pharmaceutical brands. This, I believe, has more to do with cost and budgetary restrictions than the genuine belief of well- meaning derms that these greasy, mineral- oil- rich lotions are actually the best thing. But that is only my opinion as a long-term NHS derm patient who comes from a pro- science and largely pro- chemical stance.

I would have to agree with her here – especially after the great aqueous cream scandal which was uncovered a few years back. Read all about it here, but essentially the cream was being prescribed by GPs for years as an emollient when it should only ever have been used as a cleanser – it contained detergents which, when left on the skin, caused the skin to dry out. I remember it well – slathering it on and then ending up in tears of horror as my whole body desiccated before my very eyes.

Sali talks about lots of different skin care products and makes recommendations based on your skin type, mine being dry, dehydrated and sensitive – as well as eczema-riddled of course! I have followed many of her recommendations to the letter and keeping in mind Dr Cook’s cleansing advice, here’s what I’m now doing:

Cleanser: Liz Earle Cleanse and Polish Hot Cloth Cleanser.

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Apparently Liz Earle had eczema and so combatting her skin care issues was largely the inspiration behind the massively successful brand – this was enough for me to give it a go alongside a recommendation from good old Sali. The cleanser is fantastic for my skin, has never caused irritation, in fact on the contrary – even when it’s at it’s worst, angry and red this visibly helps to calm it down. The soft muslin cloth gentle exfoliates and sloughs off those dry skin flakes. So that’s my cleaning done, onto the hydrating.

Serum: this is a skin care step I had never heard of before, but I am reliably informed by Pretty Honest that the fine texture, “penetrates quickly into the upper layers of the skin” and contains, “higher concentrates of key ingredients than moisturisers.” As Sali has dehydrated skin and ichthyosis I was keen to ape whatever she was using and to my slight horror that was a product called Advanced Night Repair by Estee Lauder.

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Yes, it’s one of those hugely expensive anti-aging skin care products marketed at women heading into their twilight years. But it is packed full of hyaluronic acid, Dr Cook-Bolden remember, and lots of other ingredients that help to calm and moisturise the skin.

Take a look at this post on the blog Clemmie’s Big Sister for a full breakdown of all the amazing ingredients and what they do for the skin. It feels amazingly hydrating and I do think it has made my skin feel softer. Hand on heart, I do think this is working for me. Is it worth the price of half a week’s grocery bill? I’m not sure, but I’ll keep you posted.

Mosituriser: Now this where I have had to really take a punt. I am baffled by the thousands out there and have almost run away screaming at the vastness of the decision – so I confess to having a go with the Liz Earle, non perfumed Superskin moisturiser – mostly on the strength of the brilliance of Cleanse and Polish.

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Among lots of other ingredients it contains: shea butter, glycerine – which helps the skin to hold onto lots of water, just like hyaloronic acid (humectants remember), borage oil – which contains gamma linolenic acid which, according to Liz Earle, “helps to lock moisture onto the skin” and Vitamin E – which, according to Sali, us eczema patients are more likely to be deficient in.

At first it didn’t seem to offer sufficient hydration – a bit of a long-running issue I have with most moisturisers and something I get around by applying some of the gorgeously soothing Pure Potions Skin Salvation skin salvation

But after a few days it did start to make a difference. It also comes in quite a swanky pot and forgive me for being a complete sucker – but it feels like a little bit of luxury. *Bleaugh, I hate myself a little bit for saying that!*

We’ll see – I’ve only been doing this for a few months, but I have definitely seen some major improvements and have had the longest run of good skin days for years – I won’t lie to you, I have had a couple of horrible flare-ups which I have managed with *very* short doses of prescribed eczema creams – steroid/protopic.

But for what it’s worth, here I am looking smooth, eczema-free and almost comfortable with having my picture taken!

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So come on then – what’s your routine? What works for you?

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Eczema and the gaping gender beauty divide or Channeling my inner Bill Murray

I have been reading Sali Hughes’ beauty column in the Guardian on Saturday for years now and I love her honest, no nonsense style. The ability to change the way you look with make-up must be incredibly liberating; to be able to reflect or deflect your mood with colour and pizazz I imagine is a joyous affair. But it is something I’ve never really been able to participate in – whenever I’ve tried it’s resulted in some fairly horrible skin reactions – completely counterproductive, so frankly I just stopped bothering.

So it surprised me to find out that Sali is an ichthyosis sufferer. Ichthyosis is a pretty miserable skin condition, it’s the result of a faulty gene affecting the rate at which skin regenerates – it either sheds old skin cells too slowly or skin cells reproduce too speedily. Whichever it is, it results in a build up of rough ‘fish scale’ skin. If you want to know more about ichthyosis visit the amazing Carly Findlay’s blog all about her life managing the skin condition and her battle with appearance diversity.

This year Sali published, Pretty Honest: The Straight-Talking Beauty Companion and on the strength of the fact that I love reading her writing and that she is a fellow ‘scaley’ I thought I’d have a read.

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Straight away I felt a tiny bit deflated, here’s what she has to say in the introduction:

“There are two mantras I live by. The first is my grandmother’s. One day, as a very little girl, I sat on her bed watching her spritz on Yardley English Lavender perfume, powder her face from a gilt Stratton compact and slick on her fuchsia No7 lipstick. Transfixed, I asked her why she wore make-up. Clicking the lipstick shut she said, matter-of-factly, ‘Because when I’ve got my make-up on, I’m always ready. Imagine if I was out and got some lovely invitation that I couldn’t accept because I wasn’t looking and feeling my best? With make-up, I’m always able to go on the adventure.’ I never forgot it and I apply the same theory to most days. The other is one that I remind my friends of whenever they’re feeling ill or blue, and I invariably send them a huge care parcel of beauty products and make-up. I believe that the only thing worse than feeling like crap, is looking like crap too. Often we can’t do anything about the former, but I feel passionately that addressing the latter can only help.”

I have had to work so hard on my ability to separate those two things: looking crap/feeling crap. See, Feel the eczema and do it anyway for much more on this. For the most part I can do it. But there are days when I really can’t – armour at the ready – scarves, hoods, eyes down.

And today is one of those days.

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On days like this I have to confess I do get a bit agro. I get angry at the unfairness of the gaping gender beauty divide. One image from last year really stuck in my craw. It was Bill Murray on a water taxi in Venice, flanked by two young beautiful women with perfect skin, on his way to the wedding of George Clooney and Amal Alamuddin. His face resembled mine on a bad day – puffy and red with not a scrap of make-up on. Google it and have a look. Now honestly, if that had been a female actor contemporary of Bill Murray’s up there waving gladly at the world’s press (and good luck gathering more names of women in this category than you can count on the fingers of one hand), it would have been front page news. Imagine Meryl Streep up there with a blotchy puffy face. I can just imagine the headlines.

Bill Murray felt able to ‘go on the adventure’ that day – it looked like a hoot and I reckon everyone probably had a great time. It was stylish, sparkly and shiny – legendary Hollywood glamour. I wonder if he cared about how he looked that day – maybe he did, who knows. Maybe he gave himself a little pep talk before he left the house, we’ll never know, but there is no denying that there was one rule for the men and another for the women. I can’t even conjure up a name of a female in the public eye who would have so confidently set off into one of the most photographed events of the year looking like he did.

But here I am, looking like that today. I don’t have a hollywood wedding to go to (that’s next week) but I do have a presentation to prepare for tomorrow where I might even have to appear on camera. And right at this moment, that fills me with dread. I’m going to have to dig very deep to channel my inner Bill Murray. Wish me luck!

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Skin Salvation, Selexir Peace Balm, Gentle Green Soothing Cream – early impressions

Over the last couple of months I’ve been trying out a few potions that have hit the market – all with anecdotal evidence to support great effects on eczema and dry skin – holy grail miracle creams according to some of their reviewers. All of them, I think, have been developed out of a need to find something that worked for the creator’s children or the creators themselves as an alternative to existing emollients and to avoid the need for steroid creams.

As everyone who suffers from eczema knows – what might be a miracle cream for one could fall flat for another and at worst cause a horrible reaction. There is also the massively disappointing scenario whereby the cream works miracles one week and appears to be the cause of a flare-up the next.

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But, the skin on my face has been so inflamed,puffy, creased and flaky over the last couple of months – my usual routine of Aveeno and Vaseline with a short blast of steroids to tackle  intense flare-ups has not really cut the mustard. So I decided to take the plunge and have a go at these little pots of mystery.

Here they are from left to right:

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1. Gentle Green Soothing Cream

2. Selexir Peace Balm

3. Pure Potions – Skin Salvation

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Selexir Peace Balm

I first came across this after a glowing review on Twitter which claimed to work miracles on the blogger’s skin.

This cream/balm is the result of Selexir founder Elena Herdieckerhoff’s personal quest to find a solution to her own skin condition – soon after that friends and family were asking if she could make more for them and Selexir was born.

It’s not cheap, 15ml for around £25 and then getting on for £60 for 50ml, which I guess is down to its long list of botanical ingredients:

Black currant, black cumin, shea butter, aloe vera, honey, beeswax avocado, evening primrose oil, radish root, Japanese honeysuckle, garden honeysuckle, extract of poplar bark, centella asiatica extract, chamomile, calendula, witch hazel, cupuaçu seed extract, lavender oil, mango seed butter – to name but a few!

I wanted to like this cream so much, given the many documented success stories, and was prepared for a lifetime of shelling out a small fortune if it worked. But after the first application I’m sorry to say it really did nothing to calm my red and inflamed skin and even after several layers it didn’t manage to hydrate sufficiently to penetrate the awful flakiness.  I am very well aware that you need to give skincare weeks to truly know whether or not it is having a long term  effect – but I needed instant relief and this just didn’t do it for me.

Gentle Green Soothing Cream

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My son suffered very badly from eczema all over his little body when he was 5 – scratched himself raw, wore bandages to school, cried himself to sleep – life was miserable. Until we found eczema clothing – enclosed cotton pyjamas with no inside seams meant reduced scratching at night and the lessening of the symptoms. Highly recommended for anyone in the same situation. (www.eczemaclothing.com) After he suffered the worse case of chicken pox I’ve ever seen at the age of 6 – the eczema happily disappeared.

But I still get the catalogue. And on the pages of the latest issue – there was an ad for Gentle Green Soothing Cream. I’d just been paid, so I decided to treat myself. £30 for a pot.

Gentle Green Soothing Cream was created by Hannah Pearson at her home in Devon. She suffered from severe eczema as a child which inspired her to create an alternative to conventional steroid treatments.

Ingredients: Shea Fruit butter, Avocado butter, Coconut butter, Sunflower oil, Rosehip seed oil, Hemp seed oil, Sea Buckthorn fruit, Marshmallow, Calendula, Chickweed, St John’s wort, Nettle leaf, Roman Chamomile, Manuka, Lavender.

The first thing you’ll notice is that the Green Cream is orange. It’s a little like the consistency of set honey. But when applied instantly turns into a kind of wet slippery thin grease which takes a long while to sink in. This was totally not for me from the moment of first application – it did hydrate me immediately but left my face so wet and slippery it would have been impossible to feel or look dry. After it did sink in I’m afraid I felt like I needed an immediate top up. Again, I really wanted to love this. I admire and support the efforts of sufferers to find a solution to their own skin problems but, like I said earlier, each eczema sufferer’s skin is so different, with different needs and unique reactions. Wet and slippery might be just up your street – but I needed something with more welly!

Pure Potions Skin Salvation

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I have naturally saved the best till last.

Pure Potions Skin Salvation is yet another kitchen sink tale of eczema woe. A Brighton based mother was exasperated by the state of her daughter’s skin and the lack of help offered by medical staff other than to blast with steroids (which, for my skin, I need to do from time to time) – so, yes you guessed it she came up with her own. I really take my hat off to these domestic alchemists – I wouldn’t have a clue where to start!

This is from the Pure Potions website:

“Natalie Balmond, founder of Purepotions, formulated the first of her products when her daughter Lula was suffering from a chronic dry skin condition.

None of the treatments she had tried, conventional GP-prescribed creams or alternative remedies,alleviated the itching and soreness that was causing Lula a great deal of distress. Lula was so poorly that 90% of her body was covered in open bleeding sores and she had to be wrapped in bandages every day. Natalie was desperate to find a solution and finally she took matters into her own hands.

With much determination and experimentation, Natalie developed a natural salve in her own kitchen, using a combination of herbs and oils which dramatically improved the condition of her daughter’s dry skin.”

The ingredients:  Olea Europaea (Olive) Fruit Oil, Cera Alba (Beeswax), Carthamus Tinctorius (Safflower) Seed Oil, Cannabis Sativa (Hemp) Seed Oil, Calendula Officinalis Flower Extract, Chamomilla Recutita (Matricaria), Stellaria Media (Chickweed) Extract, Urtica Dioica (Nettle) Extract.

£12.99 for 60ml.

Well, after I had scraped out my first, very solid, finger load (think the consistency of butter straight from the fridge), warmed it in my fingers and applied to my face … aaaah – instant relief. It is a balm-like consistency, but once you’ve scooped out the tiniest amount and started working it into your skin it turns into another slippery hydrating treatment. But this one does soak in and it leaves my skin feeling soft. You wouldn’t want to leave your front door straight after applying it, you do look like you have a face full of grease for some time, but for me anyway it offers some real hydration on top of my regular emollient.

But the best thing about Pure Potions is that it helps to calm the anger and fire in my skin when I’m having a horrible flare up. Anything thin with a liquid consistency can really burn when I put it straight onto my inflamed skin and this is where skin salvation really earns its stripes.

So, I’ll leave you with an image of pure comfort and joy. It’s very early days yet – but here’s hoping.

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This is what the British press thinks eczema looks like…

IFHave a look at this picture. This is, apparently, what the British press thinks eczema looks like. No, not Bradley Wiggins, the beautiful woman in bed in a sexy nightie.

It’s a screen grab from an article on the OK Magazine website which claims that you can “Banish eczema for good” with their healthy living tips.

OK? Stopped laughing yet? It gets better. The massive leading picture for the online piece is of Tess Daly who, says OK Magazine, has a daughter with eczema. She, on the other hand, is slim, attractive and has perfect skin.

Compare the OK Magazine image of this woman relaxing in bed in full make-up and a sexy nightie with me ‘relaxing’ in bed when my eczema has been at it’s worst: lying on an old beach towel to make sure I don’t get blood from my broken skin on the sheets,  hands in cotton gloves to stop me scratching, face shimmering with several layers of grease.

Admittedly this is an article from three years ago, but after a bit more digging I discovered that pretty much  across the board eczema is represented by images of slim, white, attractive females with no traces of eczema or even dry skin. Take a look at these examples in the Daily Mail  and even the BBC

If you want to see what eczema really looks like, take a look at a previous blogpost on here or the amazing Jenny Stradling’s blog, I Have Eczema .

The OK article goes on to give an example of some celebrity who described her red patches as ‘ugly’.  So, we have an ‘ugly’ condition illustrated by pictures of beautiful women. Of course, OF COURSE,  illustrating the words with a picture of the Strictly Come Dancing presenter and a beautiful woman in bed is going to get more people looking at the article online, I’m not an idiot. But really, they had their target audience, presumably sufferers of  eczema (?), at “Banish eczema for good.” People with eczema desperately lap up articles which claim to ‘cure eczema’ or reveal the latest miracle potion. And there are six million of us in the UK – that’s a big audience. You don’t need to show us pictures of beautiful women – we’re sold already.

The use of images of beautiful women to illustrate just about any topic is nothing new but, apparently, they are causing more damage to people’s self esteem than ever before. “Body image dissatisfaction in Britain has never been higher, particularly among young people,” says Jo Swinson MP, the chair of an all party group on body image. “The pressure to conform to the impossible body ‘‘ideals’’ we are bombarded with in advertising, magazines and on the catwalk is overwhelming and damaging.” 

The average woman is subjected to around 600 photo-shopped images per day. Take a look at the before and after shots on Beauty Redefined. It’s a real eye-opener – but most of all, it proves that many women are endevouring to aspire to a beauty ideal that simply doesn’t exist.

If you’ve got eczema, you’ll probably already know a lot about low self esteem and body image dissatisfaction anyway. To be honest you will often find yourself comparing your skin unfavourably to the average woman in a supermarket queue let alone an airbrushed-to-within-an-inch-of-her-life model in  a magazine. So, to land on a web page claiming to help you banish your eczema for good which then bombards you with images of beautiful women – well, that’s just cruel isn’t it? Except, what it does do is present a real opportunity to highlight just how ridiculously prevalent and laughable this lazy littering of the unnatural ‘body ideal’ is on websites and in magazines.

I’ve written a couple of blogposts on here about the viscous cycle of feeling bad about your eczema and the resultant worsening of eczema symptoms – most of that being down to the unnecessary shame involved with how we look to others. Now, if an article on eczema can’t even represent the subject with truthful images of the condition then there’s little hope of picture editors deciding to represent real women on the pages of magazines any time soon. So, do yourself a favour – don’t let it get you down, remind yourself of the reality, rise above it, laugh about it, get angry and complain to the publishers if you like  – but above all take it for what it is: lazy and thoughtless.

P.S. Just today this article appeared in the Daily Mail . Spot the pictures of real eczema. Now spot the pictures of thin, white, attractive women with great skin. 

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No more hiding, no more shame

Did you know that at one time or another 60% of adults report that they have felt ashamed of the way they look? Yes, you heard correctly, ashamed. I feel ashamed when I’ve let my kids watch three hours of telly on the trot so that I can read the paper, but the way I look? Well, that’s not so much within my control.

If you suffer from eczema, how you look each day is a little bit of a lottery, so to feel shameful about it is about as futile as a hedgehog feeling ashamed of its spikes. But, clearly there are lots of people who suffer from eczema (currently 6 million in the UK)  who do.

IMG00382Apparently, 20% of those with severe psoriasis are on anti-depressant medication and an All Party Parliamentary Group on Skin discovered that many sufferers of skin disease are likely to suffer from mental health problems as a result of their condition.

I wrote my first blog post on Beczema last week – ‘Feel the eczema and do it anyway’ – all about breaking the damaging link between looking good and feeling good. And I had such a warm and positive response from so many, but some have said that they will never get used to their facial eczema and will continue to hate the way they look. That’s totally understandable, especially in the severe cases of facial eczema that don’t get much public exposure, it’s not their fault they feel judged because of their appearance.

This obsession with our appearance has apparently intensified massively in recent years – according to yet another APPG report this time on body image, this is the fault of the media and the fact that we are ‘mis-sold’ an ideal of the perfect body. And people are responding by going under the knife, apparently cosmetic surgery has increased by an incredible 20% since 2008.

Professor Nichola Rumsey, Co-Director of the Centre for Appearance Research, told the enquiry that, “we are increasingly living in an appearance saturated society and that the value individuals place on their appearance is becoming greater and more disproportionate to other aspects of self-concept.”

So, who can blame sufferers of skin disease for wanting to hide away from the world. If folk with lovely stretchy, elastic, non flaky, non red skin are hiding themselves away because they don’t live up to the ideal – then, frankly eczema sufferers have a much better excuse.

Except, by withdrawing from the world, eczema sufferers are stirring up their eczema symptoms and creating a situation for themselves whereby their condition can only get worse.

Two dermatologists from the US, Dr Richard Fried and Dr Fran Cook-Bolden have looked closely at the the ‘Skin-Mind’ connection in the treatment of eczema, psoriasis, and other common skin disorders. They have evidence that, “many patients with skin diseases such as psoriasis, acne, or eczema, actually get worse when they are stressed, when they are under times of depression or anxiety.”

Not surprising to anyone who has had the inevitable flare-ups around exam time, interviews, wedding days! But, while the gradual withdrawal from public life might seem like the most comfortable option, the isolation that sufferers feel contributes significantly to longer term depression.

eczema 1“This self-perpetuating negative interaction between stress and impaired skin function has been well-described,” says Dr Fried, “and often underlies the so-called ‘vicious cycle’ that exists between skin and negative emotional states.”

According to Dr Fried, the patients who make improvements under his care are able to look back and see how their response to the way they looked affected their lives. “Only after patients are improved do they look back and realize how much their psoriasis, eczema, or rosacea has robbed them of their interaction with life,” says Dr Fried.

I know it takes a huge amount of effort to get out there during an eczema flare-up – but every time you win that battle you confirm to yourself that it can be done. You don’t have to ‘rob yourself’ of anything.  Unless your eczema is physically preventing you from ‘interaction with life’ – then you have an opportunity to break that negative cycle. To get out and enjoy yourself,  to crush the bad habits of feeling anxious about the way your skin looks to others.  

I’m not saying it’s easy, far from it. I have to give myself a pep talk before any public events when my eczema is at its worst. For example, this weekend I had a party to go to – a garden party in the middle of the grass-pollen season! Naturally, my skin allergies and resulting eczema showed up right on cue. The skin on my face was angry, red, and unbelievably itchy.

beczemaBut, I put my best foot forward. Put a smile on my face and introduced myself to lots of new people – asked them questions about their lives and totally ignored the elephant in the room (well, the garden).  And it worked. I didn’t allow myself to hide away in a corner like I might have done some years ago or make excuses for the state of my skin, I didn’t let it rule my life. Not only did the satisfaction from winning that particular battle feel amazing – I had a great time.

Professor Nichola Rumsey said, “by focusing too much attention on appearance, other important attributes such as intelligence, kindness and determination were seen to be becoming less important.”

We are in a unique position as eczema sufferers, sometimes we just can’t look good – so focusing on appearance is a bit of a waste of time. Instead, we are free to focus entirely on intelligence, kindness and determination. And all for the good of our health.

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Feel the eczema and do it anyway

Do you want to hear something really sad? This is what one woman told an All Party Parliamentary Group looking into the effects of skin disease on a person’s physical and psychological well-being – “I feel like I am disgusting. I feel unattractive and I have such little confidence in myself as a result of how I look. People stare at my face and it makes me feel completely worthless.” This was a woman with severe acne, but anyone who has suffered from facial eczema will know exactly what she’s talking about.

Getting eczema on your face is awful. It’s sore, it itches, it can make you feel truly terrible. But, I’ve had bad patches on the backs of my knees which have been far worse than the flare-ups on my face and they haven’t made me feel nearly as unhappy as when it’s up there for the world to see. It’s obvious of course, we all want to look nice, presentable, attractive even. But, why should simply not looking nice lead to feelings of worthlessness?

In fact, the situation is so much worse than you would imagine. In April 2013 an All Party Parliamentary Group on Skin published a report on the effects of skin disease on a person’s physical and psychological well-being. Apparently, they wanted to get in there before the massive NHS overhaul and make sure that dermatology isn’t conveniently swept under the carpet. If you suffer from eczema, like I have done for the last 40 years, the findings in the report will come as no surprise. Eczema makes you feel bad and feeling bad makes your eczema worse. How’s about that for catch-22?

But, the report also tells us that skin disease can adversely affect almost every aspect of a person’s life and in some extreme cases can ultimately lead to thoughts of suicide. “Common psychological problems associated with skin disease include feelings of stress, anxiety, anger, depression, shame, social isolation, low self-esteem and embarrassment.”

And, to top it all, the report is pretty conclusive in its findings that general health practitioners not only do not prioritise the treatment of skin disease but actively trivialise it. Apparently, dermatology is not considered a core module in university medical and nursing courses and as a result, according to the report, there is a severe shortage of dermatologists in the UK.

The report goes on, “Until dermatology has been recognised as one of the core fields of primary care, variation in the standard of provision is only likely to get worse.”

I very much doubt that a low-key cross-party report is going to make significant waves any time soon, if at all.  So, if we’re being realistic, we’re on our own. Like anyone else who suffers from eczema, I must have tried and tested every cream, emollient, moisturiser and food supplement going. And I still do – I never give up on the holy grail quest for the miracle cream or magic pill. In fact, sometimes I believe I’ve found it – but then the old flare-ups come back and I’m back to square one.

Topical treatments are all well and good, but if you’re like most eczema sufferers you’ll probably end up reacting to them in the end. When I went for allergy testing it turned out that one of the strongest substance reactions was to hydrocortisone cream, something I had been prescribed by my doctor to treat my eczema for decades. So, the upshot is – we’d better get a bit better at dealing with the reality of living with the disease.

The incredibly unhelpful and damaging link between ‘looking good’ and ‘feeling good’ is as good a place to start as any. Facial eczema sufferers can frankly feel handicapped by an inability to improve their appearance.  Make-up is a no, no for many – the only thing that you can slap on your face is a handful of anodyne grease prescribed by a GP – so when you simply CAN’T look good, what do you do?

Well, the report tells us that people are hiding in their homes because of the state of their skin, retreating from the world. At a basic level, they are failing to contribute to conversations and on a larger scale, they are denying themselves the opportunity to be in a relationship  (worthless and disgusting remember?) and damaging their professional lives by not putting themselves forward for job interviews.

I can absolutely sympathise with this – I have done my fair share of creeping around the edges of life, hiding in the shadows, not drawing attention to myself for fear of anyone looking directly at my face. But, while I know that the psychological effects of looking awful are to be taken very seriously, let’s face it, this problem is something we have totally invented for ourselves as a society.

I have never really been able to wear make-up because of my facial eczema, which actually suits me fine because I’m a bit lazy and I’m not sure I could be bothered with the rigmarole of it all. But, I’m certain that being completely cut out of that cosmetics merry-go-round has done me no harm at all and, perhaps, puts me in a better position to say this.

It takes a lot of effort to be confident. Lots of talking to yourself into things that you find uncomfortable. But, take it from me, the pay-off is huge. I don’t know what my face will look like when I wake up in the morning, some days it’s fine but some days it looks like I’ve been stung by a swarm of bees and been given a chemical peel during the course of the night.  But, one thing I can guarantee is that at least one day out of seven, I’m not going to look good. So, after decades of hiding I have taken a very large and sharp machete to that link between looking/feeling good.

In fact, in true blog style here’s a couple of ‘before and after’ shots:

BEFOREThis is me looking bad and feeling BAD.

AFTERBelieve it or not, my skin was terrible when this photo was taken. Itching madly, skin around my eyes puffing up like a balloon and generally  flaky and sore. Very nearly as bad as it was in the before photo. The difference is – I genuinely don’t feel bad about it. 

beczema

Melanie Reid broke her neck and back falling off a horse and writes a column for The Times about her experiences. “There are some things you don’t learn until it’s too late. One is that a woman’s relationship with her own body image is a totally unnecessary war. If I could reclaim even half of [my time], how much better I would have spent it – dancing, running, travelling, kissing, talking, laughing, reading, playing sport.”

So, taking the risk of being horribly trite – ask yourself this. Does your facial eczema prevent you *physically* from doing a single one of the things on that list? No? Then what the hell are you waiting for?

             
    

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