A Coping Dilemma

Printer-friendly version

The pressure of modern living is something we all have to endure; society has become a 24 hour 365 days a year merry-go-round. The pressure to keep going, keep up and don’t fall off is the way people are expected to live. The media imagery and portrayal of the perfect home, family, bodyweight, clothes and appearance are beginning to give a distorted spectrum of what is normal.

So what is normal? Well for someone with psoriasis or indeed psoriatic arthritis nothing is normal. The skin becomes red and sore and develops flaking thick areas of skin which are described as scaly plaques, these then build up so fast that the surface flakes away causing showers of dead skin to be deposited wherever the individual passes. Most commonly affected areas are the arms, legs, torso and scalp, but in some cases the face, hands and soles of the feet can also be affected. With some individuals the psoriasis affects the nails causing pitting and lifting from the nail bed, this is often present in people who develop psoriatic arthritis which affects about 10-20% of those with psoriasis. Psoriasis affects about 2% of the UK population.

There aren’t currently any cures for psoriasis or psoriatic arthritis, but given that both conditions are of genetic makeup management of the symptoms is currently the only option that patients can expect. This poses tremendous problems.

The commonest way to treat psoriasis is with topical applications ranging from basic emollient therapy to high potency steroids creams, the latter presents its own problems as over use can cause skin thinning and internal absorption. Vitmain D ointments, vitamin A creams, ultraviolet light therapy, dithranol paste, tar based products are part of the range of unpleasant, messy and time consuming products that the psoriatic has to deal with. Newer biological therapies have been used but these have side effects that many patients might find intolerable or too much of a risk to consider.

So the dilemma that faces us psoriatics (I include myself in this as I have had psoriasis for more than 30 and psoriatic arthritis for more than 25 years) is what do we do to the live a life as normal as we can, with a disease that is a 24 hour and a 365 days a year condition. If we do not treat our skin we may be discriminated against or be treated with revulsion, if we treat our skin we are faced with daily lengthy treatment sessions either self administered or trips to the local outpatients unit, or the contemplation of side effects of drugs that may have a long detrimental affect our life outcome.

This is where patient organisations can offer some help, my personal dilemma when finally diagnosed with psoriatic arthritis was, where do I go now? At that time which was the early 1990s, there appeared to be little advice or information that was relevant to my circumstances. The aim of PAPAA is to create an organisation that fulfils the basic needs of newly diagnosed individuals whilst acting as a listening ear and support to those with long-term disease.

The development of PAPAA has been based on patients needs and we consider that much of our work is to help people organise their own thoughts and views about their circumstance and take what they feel is appropriate action.

Although the PAPAA does have subscribing members, it also offers free registration and provides information without any further obligation to join or donate.

It is my belief that those most in need should be given, what they need, when they need it without restrictions or prejudice.

So back to start of this article what should we do to cope with modern society? Although, we all would love to be individuals and not conform, it is not always possible; it is difficult to change attitudes particularly when something such as psoriasis can be so obvious and misunderstood. So learning to cope within the accepted boundaries, managed our conditions in way that we feel comfortable, which in some instance will mean hiding it away or creating a comfort zone.

At the end of the day it is not how others see us, but how we think others see us that cause us the most pain.

Article by David Chandler.

© PAPAA 2008