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Dublin: 20 °C Wednesday 12 August, 2020

Column: ‘I have never worn a sleeveless shirt’ – one woman’s life with a skin disease

Most people know about psoriasis – but few realise the devastating psychological effects that it can have, writes Caroline Irwin.

Caroline Irwin

I HAVE HAD psoriasis since I was nine years of age, and I am now 51. I cannot remember a time when I didn’t have this skin problem.

My GP was my first port of call for treatment, which is the case for most psoriasis sufferers. I was told it was just a skin problem and had to live with it. Creams were applied but no information was given how to do this correctly. I did not visit a dermatologist until I was 18. By then my skin was severe, and I had to be hospitalised.

I have battled with this for all these years and have used every treatment known to man. I lived abroad for many years, and it was while I was in Holland and hospitalised for the third time that I realised how serious my skin problem was.

After I moved back to Kilkenny, I went through a very depressing time. The first thing I thought about every morning was ‘How is my skin this morning?’. It was also the last thing I thought about at night. I have never owned a knee length dress, or worn a sleeveless shirt, and I have never learned to swim.

Eventually, with the help and support of my marvellous dermatologist I set up a support group in Kilkenny and this eventually led to the formation of the Psoriasis Association of Ireland. This has been an eye-opener for me as I have learned so much more about myself and my skin. I began to realise that it was not just a skin disease which could be covered up and ignored.

‘One woman hangs towels over the bathroom mirrors’

Over the years I have spoken to many sufferers and began to realise the psychological effects that the condition has on people’s lives. People have given up soccer, swimming and other sports because of the embarrassment of changing rooms. This leads to a sense of isolation and leads to depression and stress which aggravates the condition more.

I spoke to a woman who hangs towels over the bathroom mirrors so she doesn’t have to see her body when she gets out of the shower. A young married woman told me how she would pick a fight with her husband before bedtime so she would not have to get intimate with him.

Trying on clothes is a nightmare; if the garment doesn’t fit, you hand it back to the assistant covered in white scale. This leads to funny looks. Several people dread summertime as they can’t cover up as much or go swimming with their children. Many people avoid going to hairdressers and staying in hotels as they leave scale everywhere. Many people carry portable hoovers with them when they travel.

Young people are sometimes devastated by the condition; they avoid relationships and intimacy as much as possible. One young man I spoke to have no plaques on his body but had nail psoriasis. He gave up socialising completely even though it was not very visible – to me it was mild, but to him his life wasn’t worth living.

Many feel they are the only ones suffering. The more your skin gets worse the more you cover up which means it’s not talked about. Then this begins the cycle of isolation, depression and growing stress levels – which drive psoriasis to break out more.

‘Very little is being done in Ireland’

Very little is done in Ireland in relation to the physiological effects of living with psoriasis. It is a minefield that has never been dealt with. In the future, we would like to see a different approach to psoriasis from both the medical world and the general public.

When a suffer has psoriasis their first port of call is usually their GP. I cannot stress enough the importance of this first visit. I would hope in the future that a quick checklist can be made by the GP while diagnosing psoriasis and each person be given an information pack with our brochures and other information on the condition. Then a treatment plan be arranged to come back within a month to six weeks either to see the GP or a dermatology nurse. These nurses are available in some large practices around the country and offer invaluable information and support in relation to the application of creams etc. If the psoriasis hasn’t cleared up sufficiently then a referral should be made immediately to a dermatologist.

Also an all-round treatment is needed: one that deals with the medical side in conjunction with the psychological effects, using a more holistic approach including relaxation, yoga and counselling in many cases.

As I write, there is a campaign to get the World Health Organisation to recognise psoriasis as a chronic illness. If this happens it may help in the future to obtain a long term illness card for psoriasis sufferers. At present it can cost €120 at the pharmacy each month, and one could spend another €20 on moisturisers, shampoos etc.

In many cases psoriasis is mild and can be treated very successfully by GPs, but if ignored and not treated it can become very serious. My message to anyone out there is to get it diagnosed properly. Follow the advice you are given, and contact the Psoriasis Association of Ireland to get help and support from fellow sufferers.

Caroline Irwin has suffered from psoriasis for more than 40 years. She is the founder of the Psoriasis Association of Ireland and lives in north Kilkenny.

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Caroline Irwin

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