Living With Skin Disease

In biblical times lepers had to live outside of society. In medieval times they had to ring a bell and call "Unclean" wherever they went. Catching leprosy requires living in close contact for a long time and many labelled as lepers probably had diseases such as eczema or psoriasis that are not infectious. The stigmatisation of lepers was not a public health measure to control spread but a reflection on how people view those with skin disease.

Simply having skin disease is bad enough but the social response of others makes it much more difficult. Only mental illness and sexually transmitted diseases receive such stigma.

15% of the UK population consult their General Practitioner for skin complaints each year, occupying 10% of a GP's time. According to the Skin Care Campaign, "Disease is often of a chronic, long-term and painful nature. It is significant and widespread, affecting a projected 22.5 to 33% of the population at any one time. The problems of living with skin disease should not be under-estimated. They impact on all aspects of a patient's life and those who care for them."

In summer, those with conditions such as eczema, vitiligo or psoriasis, face embarrassment, worry and depression, even if sunshine would benefit their condition. A survey of patients with psoriasis¹ revealed that many deliberately avoid swimming and communal baths or showers during the summer months. In addition, few wear short sleeves, shorts or skirts because they feel that people regard them as "untouchable" or "contagious". Playing sport, especially contact sports, is a problem. 86% believe that these problems would be lessened if the general public were better informed about their condition. Children, especially, can be very vicious about the afflicted.

A survey of patients with psoriasis from Denmark² showed that impairment of quality of life (QOL) correlated poorly with severity of disease. Ability to cope is more important. Older and married people reported less impairment of QOL than younger ones and those living alone. This probably reflected better coping skills with maturity whilst the young are more vulnerable. Those who cope better are more likely to form relationships and get married whilst those who do not cope well are doomed to a life alone. The poor correlation of QOL with severity of disease and other demographic variables such as gender and education has been reported elsewhere.³ A review from Manchester concludes that stress, either environmental or psoriasis induced, has important implications for the management of psoriasis.⁴ Depression and even suicide may occur.⁵

Cognitive behavioural therapy in vitiligo showed benefit in terms of coping and living with the condition.⁶ They also suggested that psychological therapy may have a positive effect on the progression of the condition.

Even for those in a loving and stable relationship, exacerbation of disease with possible exfoliation will cause difficulties with just cuddling up and being intimate with a loved one.

Childhood atopic eczema affects not just the child but the whole family and education may be of benefit to all.⁷

For most medical conditions treatment may require taking tablets and some adjustment to lifestyle. The demands of medication for skin disease tend to be much more restricting. The application of creams or pastes to large areas of the body is very time consuming and inaccessible places, such as between the scapulae, are not easily seen or reached. Remember this when prescribing for someone who lives alone. Medications such as coal tar are smelly and short-contact dithranol is preferable as it is washed off after a few hours.

Some unpleasant medications are left on overnight. Whilst this is preferable to having them on by day they may stain bedding and nightwear and it is a very unattractive way of going to bed with the love of one's life.

Skin disease may cause pruritis. This is distracting by day and causes insomnia by night. If itching is caused by histamine as in urticaria, one of the newer, non-sedating antihistamines may be used. Otherwise the old-fashioned ones are needed as the anti-pruritic action is dependent upon sedation.

Psoriasis and eczema are common conditions but there are some that are much more severe and fortunately rare such as epidermolysis bullosa in which the body is covered with painful bullae and every morning starts with changing dressings from painful, oozing lesions. Strong analgesia such as morphine may be required to cover this time.

For some skin diseases including vitiligo, blemishes or scars, it is possible to use camouflage to cover them.⁸ This may be simple cosmetics or more permanent such as a tattoo procedure. Generally speaking, cosmetic surgery is not permissible on the NHS, but if there are genuine problems that are not of the patient's making, referral is justified.

It is a philosophical conundrum why natural selection should have introduced such a debilitating condition in such a vulnerable age group. The quoted prevalence of acne varies considerably, depending mostly upon the criteria used. It ranges in severity from "teenage spots" from which no one escapes to acne conglobata. Many papers have looked at the implications of acne on young people. A review from Canada suggested that psychological abnormalities including depression, suicidal ideation, anxiety, psychosomatic symptoms, including pain and discomfort, embarrassment and social inhibition all result.⁹ Effective treatment of acne was accompanied by improvement in self-esteem, affect, obsessive-compulsiveness, shame, embarrassment, body image, social assertiveness and self-confidence. Acne is associated with a greater psychological burden than a variety of other disparate chronic disorders. These conclusions are echoed by many others.

A study from New Zealand showed that perceived severity of acne was very strongly correlated with objective assessment of severity, causing embarrassment and lack of enjoyment and participation in social activities.¹⁰ They added that students had misconceptions regarding the causes of acne and there is a need for all students to have access to appropriate information and health services so that the social and psychological consequences of acne are minimised.

This call for better information is a common theme. A study from Nottingham concluded that acne is a common disorder in English adolescents and appears to have a considerable impact on emotional health in this age group. Low levels of knowledge about acne and poor management are concerns that could be amenable to a school-based education programme.¹¹ A study from Barnsley looked at patients with chronic acne, severe enough to merit treatment with isotretinoin. They found that treatment with isotretinoin produced significant improvements across a wide variety of psychological functions, although the emotional status of patients appeared to be more resistant to change. Acne appears to be a condition which has the potential to damage, perhaps even in the long term, the emotional functioning of some patients.¹² An American study found that psychological morbidity was better correlated with perceived degree of acne than objective assessment.¹³

When a young person comes to a doctor about acne, it must not be dismissed as, "something everyone gets" or "you will just grow out of it". The fact that they have consulted means that it is a genuine concern, even if the condition is not severe by objective standards. If it is a girl, is she trying to obtain "the pill" without mentioning contraception? No one looks at a young person's face as critically as themselves and certainly not the adoring boyfriend or girlfriend. Use the opportunity to discuss basic principles and to dispel myths. Be sympathetic without prescribing excessively and leave permission to return. Anger is a common problem¹⁴ and it affects quality of life, emotional stability and satisfaction with treatment. It is important to identify those in need of intervention and to start treatment early before both dermatological and psychological morbidity becomes established.¹⁵

A holistic approach is essential in dealing with dermatological disorders. Talk to patients and discuss the impact of their disease, how they cope and how they feel about it. Just knowing that someone understands how they feel may help.

• Consider the impact of the disease on the patient at work, at home, in leisure and in amorous intent.
• Consider the practicalities of applying medication and the possible effects.
• Consider discomfort and itching and the possibility of infection from scratching.
• Consider side-effects of medication.
• Do not underestimate the effects of being visibly different on children.
• The impact of the disease is not necessarily related to objective measurement of severity.
• There is much myth and misunderstanding and so education is very important.

Acne does not kill but it has considerable consequences on lives. It used to be said that dermatologists' patients never get better but never die and never call them out at night. The truth in this is limited but the impact on the patient's whole life should not be underestimated.