Liz & Charlotte Smith
As Mum and daughter, Liz and Charlotte Smith, examine the challenges of being a teenager with eczema.
‘Such were the reactions we faced when I took Charlotte out on ordinary trips to the shops, the park, to Tumbletots, etc. How do you begin to explain to total strangers that your toddler is not being abused and does not have some contagious disease, but is actually experiencing a painful eczema flare?
Is it best to ignore such reactions or to try to explain? Or should you avoid exposing your child (and yourself) to such reactions and simply stay at home?
‘Charlotte is 15 now and still turning heads, but not always in the way she would wish. She has experienced eczema to varying degrees since she was 8 months old. Over the years we have been down the route of wet wraps, ichthopaste bandages, steroids, Protopic, antibiotics, patch testing, phototherapy, Chinese herbs, acupuncture, Dermasilk suits and more.
The creams and potions have taken their toll on numerous washing machines, bath mats and plugs. Carpets have been torn up in favour of laminate flooring, blinds have replaced curtains and now even the dog has had to move out, temporarily, and stay with the grandparents to reduce the effect of its dander on Charlotte’s condition.
‘Eczema really sucks! ‘Charlotte and I felt prompted to write this article for two reasons. In our experience a lot of catalogues selling specialist clothes for those with skin conditions show models without a patch of eczema on show.
Laudably many of the articles on the National Eczema Society's website are on a positive theme, showing how people cope with the condition – but seldom do readers see photographs of individuals with evident, actively painful eczema.
‘As a family we have always sought to support Charlotte in managing her condition and have ensured she is included in as many activities as possible.
My tendency has always been to ‘downplay’ the condition in an attempt to encourage Charlotte not to let it dominate her life and to take control and manage it as best she can.
‘Since Charlotte started High School 4 years ago her skin has proved more troublesome. The school is often overheated and dusty, there seem to be more allergens in the environment than was the case at Primary School and perhaps hormones and stress have played their part too. Comments can come thick and fast from pupils she has never met who feel they too can ask ‘what’s happened to your face?’
‘We even had one occasion where a PE teacher felt that a note asking Charlotte to be excused from gym due to an eczema flare was ‘not good enough’ and who asked to see what was under her bandages.
‘Although the discussion was taking place in front of the whole class Charlotte felt she had no choice but to comply, resulting in gasps from both teacher and pupils when raw, weeping flesh was revealed.
‘In the past few years I have learnt that there is a balance to be struck between “downplaying” the condition – i.e. trying to control it rather than letting it control you – and actually helping others to appreciate the reality of living with eczema.
‘Therefore to help others understand and support Charlotte, and in agreement with her, I have adopted a more assertive approach and have begun to highlight the challenges she faces.
• Following the debacle with the PE teacher, we asked Charlotte’s Dermatology Consultant to write to the School explaining her condition and how – during a flare – exercise and perspiration can exacerbate the condition.
• We appealed the reduction in Charlotte’s DLA care rate by attending a DWP tribunal together. We provided photographs, supportive letters from her Guidance Teacher, GP and Consultant, circulated articles from NES magazine Exchange on living with eczema and took two carrier bags full of creams and ointments to demonstrate what is actually involved in “managing eczema”.
The experience was terrifying and, although normally quite shy, Charlotte was brilliant and the decision was unanimous to re-instate the DLA at the middle rate.
The tribunal members were extremely positive in their feedback and praised Charlotte’s upbeat attitude. We felt vindicated somehow by the decision and that we were not “making a mountain out of a molehill” but instead were together doing rather well in difficult circumstances.
• Charlotte’s eczema is often troublesome on her face and neck and with a bit of persuasion her school now tolerates her wearing a scarf as a pick-me-up tool to reduce her self-consciousness. She still gets pulled up from time to time but she is now more able to explain to staff and pupils why she is wearing it.
• Charlotte has just finished her Standard Grades. Again with the help of the Hospital Consultant and with the agreement of the Examination Board she was afforded alternative accommodation in a less dusty and cooler environment, which meant her rhinitis was more under control and there was less likelihood of her being distracted by incessant itching.
• At age 15 Charlotte has a mind of her own and naturally wants and needs to become more independent. Part of this process also involves her dealing with reactions from others and us reaching an agreement as to when she manages things herself and when I intervene.
• Broadening the support Charlotte has received of late, so that it has come not only from her direct family but from others outside the home, has I think increased her self-esteem and confidence and helped her to cope better with the challenges of eczema.
‘We are no longer downplaying her condition. We are not apologising for it, nor are we over-inflating it and “going for the sympathy vote”. Together we are trying to be realistic about its day-to-day impact and to increase the understanding of others and Charlotte’s ability not only to manage eczema in terms of its treatment, but also in terms of facing the world.’
‘Eczema has always been a part of my life and I can’t remember a time when it didn’t affect both me and my family. I’ve learned to put up with the rude and intrusive comments that have not just come from people I know, but also from complete strangers. Some people have even thought I have been self-harming when I’ve had eczema on my arms.
‘Recently I was at A&E for a sore ankle but the doctor was more concerned about the eczema on my face thinking that I might have had an allergic reaction to something and be about to go into anaphylactic shock!
‘As a 15-year-old girl I have to deal with the same amount of teenage angst as all my peers but with the added difficulty of low confidence due to the eczema affecting my skin, which is on show to others.
I get eczema all over my body and it can feel like firefighting, trying to keep it under control. Although at times eczema can dominate my life, I do try to stay positive.
However, it’s hard to have a positive outlook all the time, especially when I can’t even go one day without applying creams and taking medicine.
Sometimes I want to cry – but that only hurts my skin more. ‘I can find it hard to pick myself up but on bad days I remember what one of the nurses at the Dermatology Department in Edinburgh said to me when I went in for phototherapy: “the skin is the largest organ of the body and so when it is affected by eczema it’s no wonder that you feel a bit run down and tired.”
I’d never thought about it like that and it always helps me put things in perspective and realise that I’m actually not doing too badly considering. I wish sometimes though that people would consider what it feels like on the inside when your skin is so sore on the outside.
My attitude is important but so too is that of other people. ‘It’s a team effort battling eczema … some days it’s easier than others.’
It’s a team effort battling eczema … some days it’s easier than others.