Counselling people with MS is more than just listening and giving advice. It is a form of helping an individual to deal with personal problems relating to the disease that is often absent from conversations with family, friends and some healthcare professionals. It is about providing support and helping people change, and not primarily about promoting practical solutions.
A counsellor is not committed to a certain medical treatment policy, and therefore, aspects of dealing with the disease can be discussed without direct consequences for treatment. Counsellors can also be helpful in shaping the style of living with MS according to the person’s wishes and needs. An optimal treatment programme for a healthcare provider can be difficult and unsatisfactory for the individual treated. A person with MS can often exert more influence on his or her life and disease management than he or she may think. Helping people with MS realise their autonomy in decisionmaking is part of the counselling process.
Aims of counselling
Counselling for people with MS focuses mainly on coping with the uncertainties and unpredictability of the illness. Each person with MS, regardless of the type and course of the illness, must adapt continuously to changing symptoms and find ways to live with relapses and remission. Learning to assess the effects of these changes (both physical and cognitive) on daily life, setting priorities for where energy should be concentrated and recognising the need for new priorities for activities and tasks, making therapeutic decisions, redistributing responsibilities within the family, and making vocational choices, are some of the important topics that can be discussed during counselling with a professional counsellor who has an understanding of MS.
After diagnosis, the need for information, advice and reassurance, especially about the prognosis and therapy options, is foremost. Information about the illness, both from the medical side and regarding public resources, especially that taken from the Internet, can be evaluated and interpreted, with particular reference to the person’s own opinion about it, with the assistance of the counsellor. When a person with MS is not followed and supported during this early period, dealing with the disease can be a lonely, isolating experience. A counsellor can be an important resource during this time and at various times throughout life with MS.
Discussing difficult topics
No one can read the minds of others, so the need to be specific and clear when communicating about personal and perhaps difficult subjects such as the amount of help and support that is required, can put a strain on relationships, especially when support needs may fluctuate from one day to another. This constant effort to be both candid and tactful can be very challenging and discouraging both for the person with MS and those around him or her. The situation often creates a need for the person with MS to be outspoken and assertive in expressing needs and desires with family members.
Assertiveness that is appropriate for the situation and contexts may require practice. The counsellor can play a role in helping the person rehearse and prepare discussions on difficult topics with family members and can provide encouragement and feedback.
Topics of counselling
Up to 50 per cent of patients with MS in the relapsing/remitting condition develop serious, and sometimes permanent psychological symptoms. Prevention or management of these symptoms is another aim of counselling efforts.
Psychological problems include depression, stress reactions and chronic fatigue. Cognitive problems can be a major concern, requiring an understanding of not only the individual, but also of those around the person with MS. Shifts in the competence and roles of parents or children within a family structure are sometimes difficult to accept. For parents, dealing with the requirements of younger family members, who often come home from school or work and expect attention and care, exactly at a moment when their parent is most exhausted, can be frustrating. Working out practical solutions can be part of the counselling process.
Counsellors knowledgeable in MS can also have a role in working with children whose parent has MS. Meeting with the entire family, with the child or children individually, as well as participating in the development of programmes and activities organised for children of people with MS, are all ways in which a counsellor can help families to deal with the challenges of MS.
Counselling can be of value both for the person with MS as well as for those who are close to the individual who deal with MS in their personal lives – either directly or indirectly. Indications for counselling include a broad range of subjects, which require close and timely co-operation with other professionals, including the nurse, neurologist and social worker, in order to be a valuable supplement to regular care.
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