Lulu O’Hagan, who runs the Kingston eczema support group, has lived with eczema all her life, helping her to support her daughter Belle.
I’m writing this to you as a 48-year-old woman who feels like the ‘original, eczema-ridden, allergic!’ In ’63 when I was born I definitely felt like a one-off – there was only ever me with the itches and allergies. Now it seems that people like me are almost everywhere you turn! I’ve had 48 years of thought processes, trials and errors, insanities – all now pointing to some sort of resolution to the misery that my eczema has brought at times. A lot of times!
I even almost avoided having children, so strong was my worry that I couldn’t let a child of mine live my life with eczema. I went with my husband to see Professor Jonathan Brostoff (Professor Emeritus of Allergy and Environmental Health at Kings College, London) in a bid to ask him what my chances were of not passing it on. They weren’t great.
So I told myself that at the very least I would be able to help my children more than my mother had been able to help me. I understood. I had daughter number one – Poppy – who seemed to be absolutely eczema free. Wonderful!
Two years and 8 months later out came Belle and – after an attack of bronchiolitis at 6 weeks with intensive care and intravenous antibiotics – out broke the eczema. Each year it got worse and worse, so that not one part of her body was wound free. She was 5 years old and we hadn’t slept one whole night. Each night had been broken by an average 2 hours scratching, bleeding and bandaging.
I watched how she reacted to her on-going itch. I knew from my own experience of lifelong severe eczema, that I didn’t need people around me telling me not to scratch. I already knew not to, but actually managing to avoid the deathly draw of the mind-consuming itch, was another thing. Scratching is a compulsion, not a choice – if it were a choice, we wouldn’t have the eczema!
Belle was always very smiley and slightly bonkers, like I think most people living with an irritation are – I know I am – and I could see that once she’d reached the age of 3 she would pretty much try not to scratch whenever possible, never mind with the external pressure of anyone telling her.
Before then, she knew no different and no better. If it itched, she scratched. That was normal. All I could do was to distract, take her out into the cold – whatever it took to try to get the itch away. Me saying/shouting ‘Stop scratching’ was not going to help.
I know from my own experience, there were times when I could just be going to have a little ‘normal’ scratch without paying much notice. Suddenly it would feel like people jumping on me with the dreaded ‘Stop scratching’, ‘Don’t do that’ or ‘Don’t scratch’ and suddenly all my thoughts would be focused on something I hadn’t originally noticed, and stress would take over.
But even I would sometimes get frustrated by the horribleness of Belle’s frantic scratching where I would say ‘Can’t you just stop?!’ Of course she couldn’t and I knew it – then felt guilty.
So I set up the Kingston and Richmond eczema support group to try to help other parents deal with the ongoing Battle of the Itch. My mission, though starting small, is to spread the word as far and wide as possible, to tell everyone not to utter those words. And to give people with eczema the permission to politely tell those with the utterances – to kindly mind their own business!
I also really feel that, of course, some people are telling you not to scratch as they worry about the damage you are doing, but there are those who just (understandably) find the whole scratching thing rather irritating and unsightly – which it is.
So I will always tell a child/adult that if they really cannot avoid the need to dig in those nails, to leave the room and be out of people’s sight. Never pleasant, as how many of us have ended up in the loos – a really unhygienic place to scratch if ever there was one. But needs must.
I also set up the group in order to end the isolation that having eczema, or having a child with eczema, brings. Somewhere to come where you will get help, advice, strength and non-judgment.
When one mum looked stricken at my Don’t say ‘Don’t scratch’ policy, because she had often muttered this exasperatedly to her 2-year old – I was able to tell her I had done the same, despite knowing what I know, and feeling what I feel.
I didn’t judge her, as the scratching part of the eczema is the most stressful, ugly part of it, which drives even the most saintly, patient person to distraction – whether they have it or not!
Who wants to see someone – let alone their own flesh and blood – doing what is equivalent to self-harming? Nobody does. So, to conclude, I would ask all of you to take part in spreading the word on Say No to ‘No Scratching’ and give each other permission and credit that we know what we are doing, that sometimes we really cannot help it, and that we are not here to judge anyone at all. Ever.
Please feel free to comment on what I have written and on other ways to spread this idea, on my dedicated Facebook page: www.facebook.com/eczemasupport. I look forward to hearing from you!