The disease limits what a person can do in everyday life in terms of physical functioning and well-being. The impact on a person’s quality of life depends largely on how he or she copes with these changes. This applies to uncertainty, stress, fatigue, cognitive limitations and relational changes. Emotional reactions, anxiety, depression and loss of self-esteem are feelings experienced by every person with MS to a greater or lesser extent. A person diagnosed with MS undergoes a cascade of reactions.
For some patients, however, the diagnosis may bring about a feeling of relief. The cause of their impaired functioning may have gone unresolved for many years. Many of their 'invisible' complaints may have been considered incredible, psychosomatic or even hysterical. This will have occurred until a medical explanation finally provided an objective insight into the periods of inexplicable weakness and unusual sensations.
The initial stage after the MS diagnosis is always accompanied by a difficult period of confusing feelings. A person with MS is affected and put to the test in the deepest of his or her being. The disease dominates their entire thinking and acting. Disbelief, protest and depression are normal reactions to their abruptly changed position in society. Participation in everyday life that previously occurred without a second thought is suddenly called into question in all its facets. Whereas before everything ran smoothly, the person with MS is now confronted by constant fear of failure, lack of self-confidence at home and at work, mood swings and incomprehension among friends and family. There is likely to be anxiety about where the person’s professional career will go from here, difficult adjustment to work resumption, overprotection by co-workers, undervaluation, insignificant tasks at work, numerous absences, rejection of job applications and disrupted relationships with the employer.
Being chronically ill increases the person’s reliance on others all the time. Social contacts and marital relationships are put to the test. We frequently see how firm long-standing friendships come under pressure and are lost due to odd but well-intentioned communication, with comments like 'You look well'. Not infrequently a person with MS feels misunderstood and unexpected mood swings can trigger painful and tense reactions. There is a need for patience, sufficient empathy and willingness to listen, but not everybody is capable of correctly assessing the concerns of a person with MS. Progressive limitations reduce the person’s social activities and lead to social isolation. Even at its early stages, the disease is frequently accompanied by mental impairment, loss of concentration and memory, debilitating tiredness and exhaustion. There is an accumulation of mental stress, physical exertion, intensive immune therapy and countless medications such as antidepressants, anti-anxiety drugs, pain killers and so on.
Sexual impairments and urine loss are experienced as seriously psycho-traumatic. They are highly burdensome in a person’s social and professional life and exert pressure on fragile marital relationships. Barely recovered from the serious setback of the diagnosis, the partners must attempt to find a new balance. Big plans have to be adapted to new and increasing disabilities. There are financial concerns, uncertainty and frustration about the parental role in the upbringing of children.
The problems accompanying MS are numerous and diverse. There is a big role here for MS care providers. They need to possess knowledge of the total care of a person with MS as an individual. By carefully listening, maximising empathy and communicating patiently, they must assist them in moving on from their feelings of powerlessness and anger to maximum acceptance of their disease in all its facets.
Prof. Jan Debruyne, UZ Gent