Multiple Sclerosis Resource Centre
  • Home
  • About MS
  • MSRC Services
  • Get Involved
  • MS Research News
  • MSRC Groups
  • Useful Resources
  • Welcome To Josephs Court, MS Centre Of Excellence
  • Advertising
  • E-Newsletter
  • Contact Us
  • Cookie Policy
  • Investor in People
    You are here : Home » About MS » Health Consequences of MS » Psychosocial Impact of MS

    Psychosocial Impact of MS

    A A A
    [Print this page]

    Share |


    Psychosocial Impact Of MSThe psychosocial impact of MS
    Originally written for doctors and other professionals by Dr Alexander Burnfield, MBBS DPM FRCPsych Andover Community Healthcare Trust, Hampshire

    Behind such questions as “Does multiple sclerosis (MS) cause mental symptoms?” and “Is personality change common?”, there is often fear and distress along with a desire for reassurance. The idea that people who have MS might become mentally, as well as physically, impaired is a particularly frightening one. Our “concept of self” is more often associated with our minds than our bodies. Loss of mobility is disabling, but loss of mental faculties strikes at the very core of our self-esteem.

    The psychosocial impact of MS is the consequence of two major factors interacting together, and not easily differentiated in practice:

    • How well a person adjusts to the diagnosis, disability and implications of MS
    • The extent of psychological impairment caused by the disease process

    Diagnosis

    Many people with MS are distressed before receiving their diagnosis, and conflict between potential MS patients and their physicians can arise during the pre-diagnosis period. In one study it was noted that many patients in this situation began to take an active role in establishing their own diagnosis, and conflicts thus extended to relationships with family and friends. Naming the disease led to a reduction in stress. The investigators in the study concluded that physicians should be urged to consider the emotional factors when deciding whether or not to inform patients of a suspected diagnosis of MS.

    With the advent of the magnetic resonance imaging(MRI) scans, it is now possible to diagnose MS far quicker than it was a few years ago. The same principles, however, remain valid. Maguire’s advice on the management of patients with breast cancer also applies in MS: “It is what treating physicians say about diagnosis and treatment that is critical in determining patients’ psychological adaptations to their condition".

    Physicians must combine learning and technical expertise with counselling skills if they wish to be fully competent. A proper balance between medical acumen and bedside manner is needed.

    Adjustment

    Once the diagnosis of MS is made, the process of adjustment can begin. The patient will need to mourn lost health and get used to a new identity. At first there may be feelings of shock and disbelief, of anger or denial. At a later stage, depending on how the situation is managed, the initial need to deny is replaced by sadness and a gradual acceptance of a new reality. It is important to recognise that this bereavement process is natural and cannot be rushed.

    People need the security of denial until they are able to replace a set of old beliefs with new ones; this process is delayed by confrontation at the wrong time which can lead to increased fear with a strengthening of anger and denial. Counselling can help patients to work through painful and confused feelings, to accept new limitations and find positive solutions.

    Many MS symptoms are invisible to other people and patients can be particularly distressed if it is suggested that their experience is “all in the mind” or that they are “exaggerating to obtain attention”. The most common misunderstandings relate to MS fatigue which can fluctuate like other subjective symptoms over very short periods of time. Memory loss, pain and urinary symptoms, like fatigue, are often a major source of stress for MS patients who are all too often labelled as “neurotic” or “depressed” by professionals or family.

    People adjust, or fail to adjust, in many different ways; this is not related to the severity of physical disability, but mental impairment is a significant factor. Important influences are personality, family support and professional management of the disease.

    Partners and children

    Multiple Sclerosis can cause considerable unhappiness within families who also have to adapt to the disease and its consequences. Partners can find it hard to cope, and are, in some ways, under more stress because they may consider they have the choice to stay or go. If the basic relationship is poor, MS may be made a scapegoat for all emotional, relationship or sexual problems. Separation or divorce can result, and is more likely when the person who has MS is female.

    Multiple Sclerosis often leads to sexual dysfunction in both sexes, and this needs to be acknowledged when it is of concern to an individual or couple. Specialist help should then be made available. Sexual problems are inevitably the result of complex interplay between physical, psychological and cultural factors. Incontinence can complicate the situation where it exists, and may also be associated with self-revulsion, depression and social isolation.

    Anger, whether expressed directly or indirectly, is common in MS relationships. Patients may find it hard to express angry feelings, especially if they are dependent and fear rejection, or if the person without MS feels guilty. When feelings of resentment or guilt are hidden, relationships can become dishonest and manipulative behaviour or “games playing” can occur.

    An insecure person with MS can adopt an unnecessarily dependent role thereby creating resentment, or a caring relative might compensate for underlying wishes to reject their caring role by aggressive over-protection.

    Children may become disruptive or attention-seeking if their needs are ignored; MS should be explained to them at a level that is appropriate to their age. They may be particularly distressed if they feel excluded, or if they believe that there is a frightening family secret.

    Some children learn to feel guilty either because they believe they are the cause of the patient’s MS or because they feel that they are an extra and unwanted burden. This can lead to depression or to behaviour problems at home or at school. Some children try to compensate by becoming very involved in helping a parent with MS. This can work out well, and many such children develop into mature and understanding adults. Some, however, grow up too fast and may miss out on being cared for as a child, becoming over-responsible “little adults”, and finding relationships difficult in adult life. When family relationship problems do not respond to counselling and become persistent, referral should be made to a child and family psychiatric service.

    Cognitive impairment

    For many families, cognitive impairment related directly to the MS disease process is the cause of much anguish and misunderstanding. In recent years, research findings clearly indicate that impaired cognition is not uncommon in MS.

    McIntosh-Michaelis et al. used sensitive psychometric tests to compare an MS population with rheumatoid arthritis patients who had an equivalent level of physical disability. Cognitive impairment was found in 46% of those with MS, with memory impairment in 34% and failure on tests of frontal lobe function in 33%. The study suggests that counselling and rehabilitation programmes for people with MS should take account of cognitive deficits that may be present.

    This author’s experience has been that, for people with MS, family members and professionals often fail to take account of cognitive impairment when faced with family and relationship difficulties. The following statements illustrate the problem:

    • “She is not interested in going out and dislikes change. She just watches TV and won’t meet anyone new”. Community Nursing Sister.

    • “I don’t seem to be able to control my feelings - I cry very easily and sometimes I laugh at the wrong times. It is very embarrassing, I can’t go out anywhere - I think my wife has had enough”. A man with MS.

    • "She is so irritable and doesn’t understand how tired I get - I haven’t had a break for 3 years and I can’t remember how long it’s been since I had a full night’s sleep”. Husband of a woman with MS.

    • “He has become selfish and bloody-minded - not the same person I married. He loses his temper very quickly and struck our son with his cane the other day. But when the nurse comes in, he is all smiles and chat - a Jekyll and Hyde character if ever there was one!” Wife of a man with MS.

    Abuse

    The problems in relationships already strained by the mutual frustration of dependence are exacerbated when a person with MS, perhaps cognitively impaired, behaves in a way that is perceived by others as thoughtless, uncaring or self-centred.

    Often those caring for such a person feel “trapped” and it is perhaps not surprising that emotional and physical abuse are sometimes a feature of relationships involving a person who has MS.

    Guidelines for personnel faced with the practical issues of managing abuse in MS families make the point that: “Disabled people are sometimes victims of abuse or they can be perpetrators of abuse of their carers or children. When a person is subject to behaviour from others which denies the person’s rights of privacy, dignity and choice, when they are subject to sexual or physical attacks, when their money is misused by someone else - we consider them to be abused".

    People working with severely stressed MS families need to adopt a sensitive but firm approach. It is essential that professionals and voluntary carers have a sound knowledge of the disease, and that they are well trained, fully supported and properly supervised.

    Of equal importance is the recognition that people trapped in very stressful relationships need regular breaks from each other. Respite care programmes, adapted housing and aids to mobility, together with well-staffed care programmes and night-sitting schemes, can free both carer and cared-for from the tyrannical demands of MS.

    Conclusion

    The fact that MS can result in psychological symptoms, and that the consequent distress can be overwhelming for family members, is still insufficiently acknowledged. People with MS, their partners and children sometimes feel guilty, misunderstood, isolated and unsupported.

    Physicians have a responsibility to ensure that all members of MS families understand that the disease itself can sometimes lead to difficulties with concentration, memory, emotional expression and self-control. It is often hard to tell which emotional or behavioural symptoms are directly caused by MS and which are a response to loss, or to difficulties in coming to terms with the disease and its implications. Symptoms of depression for instance, can be the result of a variety of physical, psychological and social factors. Treatment must take account of all these aspects, and include psychological assessment, cognitive rehabilitation, counselling and family therapy.

    © Multiple Sclerosis Resource Centre (MSRC) 

    Related Items
    Cooling
    Hormone Replacement Therapy


    Did you find this information useful? Would you like to comment on this page? Let us know what you think! We welcome all comments and feedback on any aspect of our website - please click here to contact us.