Living with Skin Disease

There has been a stigma attached to diseases of the skin for centuries. Lepers were cast out from society in biblical and medieval times as they were considered 'unclean'. Some labelled and persecuted as lepers had other diseases such as eczema or psoriasis. The stigmatisation of lepers was not a public health measure to control spread but an expression of fear, ignorance and prejudice.

Skin disease is often obvious and very visible to others. Those who suffer from skin diseases have not only to cope with the effects of their disease but also the reaction of others to their condition. There is stigma attached to a wide range of skin diseases, affecting many millions of people, just as there is for mental illness and sexually-transmitted infections.

The skin diseases are often incurable and treatments aim to reduce symptoms. Common examples include eczema, psoriasis, acne, rosacea and vitiligo. Whether these conditions are common or very rare, the impact on quality of life can be far-reaching and profound even without stigmatisation. Stigmatisation is an expression of prejudice and ignorance which the medical profession has a duty to combat with information and education. This should be extended to sufferers, their families, schools and the wider community.

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."

• Skin diseases are very common. Indeed it is true to say that everyone will at some time in their lives have some form of skin disease.
• 15% of the UK population consult their General Practitioner for skin complaints each year, occupying 10% of a GP's time.

Acne is a common skin condition which illustrates some of the difficulties of living with skin disease. Many people will be able to relate first hand to the impact of acne on their lives. Acne occurs at an age when sufferers are undergoing other physical changes which also have major psychological effects. Many papers have looked at the implications of acne on young people. For example:

• 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.¹ 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.
• 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.² 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.³
• 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.⁴
• An American study found that psychological morbidity was better correlated with perceived degree of acne than objective assessment.⁵

When treating patients with acne:

• It is important not to underestimate the impact of even mild acne on patients wellbeing.
• Use the opportunity to educate and inform. Discuss causes, principles of treatment and popular myths.
• Anger is a common problem⁶ 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.⁷

Education can be given not only to individuals but also within schools and to the wider community. Campaigns to educate more widely serve to encourage patients to seek help and to raise awareness and greater empathy in the wider community. Such campaigns may or may not succeed but it is interesting to reflect that, if it is difficult in the case of so common a condition, then the task with the myriad of other conditions seems daunting indeed.

The psychosocial impact

Skin diseases can be difficult to cope with and have a big psychological impact on patients. Even mild skin diseases can have an adverse effect and disrupt enjoyment of life for sufferers. Such disruption can range from embarrassment and concerns about self-image to low self-esteem and severe depression.
For example:

• Patients with eczema, vitiligo or psoriasis face embarrassment, worry and depression. This is particularly acute in the summer months when exposure of skin is more likely. A survey of patients with psoriasis⁸ 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 for psoriasis sufferers.⁸ 86% believe that these problems would be lessened if the general public was better informed about their condition. Children with psoriasis are more likely to be bullied.
• A survey of patients with psoriasis from Denmark⁹ 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.
• The poor correlation of QOL with severity of disease and other demographic variables, such as gender and education, has been reported elsewhere.¹⁰
• A review from Manchester concludes that stress, either environmental or psoriasis induced, has important implications for the management of psoriasis.¹¹ Depression and even suicide may occur.¹²
• Cognitive behavioural therapy in vitiligo showed benefit in terms of coping and living with the condition.¹³ They also suggested that psychological therapy may have a positive effect on the progression of the condition.
• Childhood atopic eczema affects not just the child but the whole family and education may be of benefit to all.¹⁴ It can affect sleep, schooling, development and relationships within families. It can lead to unfair criticism of parents who may deemed to be neglectful by those who may underestimate the severity of a child's eczema.

The impact of treatment

The treatment of skin disease can be complicated and will often place restrictions on the lives of sufferers.
For example:

• The application of creams or pastes to large areas of the body is time-consuming and can require help from others. Remember this when prescribing for someone who lives alone. Medications can be unpleasant to apply. For example, coal tar is smelly (short-contact dithranol is preferable as it is washed off after a few hours).
• Some preparations have to be left on overnight. Whilst this is preferable to having them on by day, they may stain bedding and nightwear.
• Skin disease may cause pruritus. This is distracting by day and causes insomnia by night. If itching is caused by histamine, as in urticaria, antihistamines may be useful.
• 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.¹⁵

An holistic approach is essential in dealing with dermatological disorders because of the profound and the far-reaching effects not only of the diseases but also of treatments. Talk to patients and discuss the impact of their disease, how they cope and how they feel about it. An empathic approach is important given the psychological and social morbidity associated with skin disease.

• Consider the impact of the disease on the patient at work, at home, in leisure activities and in all aspects of their relationships with others.
• Consider the practicalities of applying medication and the possible effects.
• Consider the impact of discomfort and itching. Think of a wider list of complications arising from the condition. For example with eczema think not just of secondary infection but also of the impact on sleep and psychosocial functioning.
• Consider the side-effects of medication.
• Do not underestimate the effects of being visibly different, especially for children. Be aware of bullying in schools and the adverse effects of this on children.
• The impact of the disease is not necessarily related to objective measurement of severity.
• Be prepared to consider a wide variety of treatments, and a wide variety of different professional expertise to help patients. The concept of a multidisciplinary team approach can be helpful in encouraging improvements for the patient and collaboration between professionals from different disciplines. For example, specialist nurses can provide valuable support to patients and can demonstrate how correctly to apply treatments.
• There is much myth and misunderstanding and so education for all is often very important. There are many common myths, and beliefs can be hard to dispel. For example, acne is not caused by poor hygiene and patients with rosacea are not necessarily alcoholic!