Disability limitations and life
Life is a gift donated to the individual who is invited to live into the world and participate in every aspect that life offers.
Usually, if the individual develops physically, sensually, mentally, spiritually and socially, under appropriate conditions, is able to create the maximum, trying to reach preset goals and/or expectations.
Chronic neurological diseases such as MS and accidents producing SCL incapacitate the persons, therefore, turn healthy persons into patients. In the face of such overwhelming or stressful situations, the persons are confronted with the challenge to overcome the obstacles and renounce the title of patient, and continue their lives in the best possible way, while adjusting to the new conditions.
During this process, the following play of a vital role:
Key words: Psychosocial adjustement, Depression, MS, SCL.
Life is a gift donated to the individual who is invited to live into the world and participate in every aspect which is offered in the physical, emotional, mental, scientific, spiritual, social sphere.
Usually, the human being starts from safety to go on to explore the unknown, to meet it and relate to it.
The child becomes aware of oneself and others, as well as the surrounding world, nearby or distant, perceiving and intergrating all possible stimuli and information. The child is also constantly learning and educating oneself, on matters general and apecific, in order to be creative and be able to develop relationships and participate in society actively.
The person achieves the maximum under appropriate conditions trying to reach preset goals and expectations in every stage of life according to given potentials at that specific time.
During the process of development the individual is constantly confronted by novel situations not always pleasant, as well as limitations emerging from the environment.
The process of growing up is not always pleasant. The Anglo-Saxons say: the “growing pains”. The Greek word for education (“pedia”) derives from the verb “pedevo” meaning of education under discipline and duress. In the Bible also we find a related statement “for those whom he loves the Lord reproves” (Proverbs 3, 12). Through this process of growing up, the individual learns how to expect difficulties and adapt methods to cope with novel as well as stressful situations, such as illnesses. The individual expects to get sick and recover from the disease, But if the illness is a chronic neurological disease as MS or an accident producing SCL, then one is faced with an overwhelming and extremely stressful situation.
From one moment to the other, the person finds oneself unable to perform the usual everyday activities, unable to serve oneself or anticipate preset goals or expectations. Within a culture which places a high value upon power, control, productivity and mobility, disability is a failure for one to meet societal standards and expectations. In the face of such very painful conditions is it possible for one not to be drawn into a depth of despair and helplessness and wander how life is going to proceed? All sorts of feelings and symptoms might appear.
Uselessness: “Feeling useless” is a frequent symptom in MS patients. Perhaps this is a psychological reaction to the diminished functional capacity and may appear even when the patient is not formally depressed3.
Helplessness: Studies indicate that helplessness affects both depressive mood and severity of fatigue. The latter may not be a symptom of depressive mode12.
Depression: Is common in MS and other neurological or not chronic diseases and may be expressed with feelings of guilt or failure, poor sleep, sadness and fatigue5.
Depression is prominent among the psychological factors affecting health appraisal8. Depression adversely affects patients’ perception of their disability6,8,11.
Self-reported measures of depression have shown to be useful to understand patient’s subjective appraisal of own usefulness within the family and community3 and have been used for therapeutic intervention.
The severity of these symptoms is affected by other factors that play a role, such as age, unpredictability, social-economical factors.
Age: Literature suggests that individuals with MS of different age self-rate health in different ways. Elderly people, even though more disabled tend to be more optimistic7,9. Depression may seem to appear as a stage in the adjustement process10. However, no data have been reported to demonstrate reliably and validly the evidence of these stages in SCL group10.
When these elderly people make their own health appraisal they appear to protect their self-perception of health by relying less on their level of disability9. Young individuals are often faced with a lifetime of uncertainty. They have to cope with an unpredictable illness, loss of function, alteration of life roles6. Evidently, social-economic status may also affect psychological symptoms9.
Younger age, less education and lack of social support were also associated with depression3. Several studies suggest that the severity of illness in MS was strongly associated witth depression2,4,6, whereas patients with longer duration of the MS have less depressive symptoms. This suggests that patients may adapt to illness over time4. Other studies showed that the MS group exhibited greater levels of depression and helplessness and significantly lower levels of self-efficacy than the SCL group. It was hypothesized that this was due to the unpredictable course of MS compared to the predictable course due to permanent injury in the SCL group10.
There is no doubt that when a person is stricken with the inevitable, at first feels lost. in order for one to recover from a similar situation will need all the faith, hopes, strength, capacities, efforts, patience one can dispose of.
It is a challenge for the ill person to confront and overcome the obstacles of the illness, renounce the attitude of being a patient and continue life, while adjusting to the new conditions.
The degree to which patients come to terms with chronic disabling situations depends on many factors including pre-morbid personality, personal activity levels peceived support and mood11.
Personality characteristics as optimism, personal agency, strength of will, persistence, patience, ability to control negative thoughts, self-efficacy, maintenance of high level of social activity1 attribute to positive prognosis10.
Working out the new conditions with oneself
Definitely, the individual needs time to mourn for oneself and experience the depression and the loss of initiative, but then there is a new beginning, hopefully, fruitful and creative. that doesn’t mean that limitations imposed by the disease can be ignored. Avoidance of reality and wishful thinking contribute only to difficulties. On the contrary, patients’ adaptations to physical disabilities are helped or facilitated by ways of copying such as focusing on the problem, focusing on maintaining health and compensating for the difficulty, positive refraiming, goal setting.
As it is evident, adjustement depends a lot on personality and coping strategies but there is evidence that patients’ perceptions or representations of their illness might play a more important role in this process.
Preliminary evidence suggests that interventions designed to alter the patients’ illness representations can improve their adaptive outcome5.
Confronting the near and larger environment
Every disease, serious or not, takes the individual out of its usual state of health and psycho-emotional balance into a new situation which involves a smaller or greater degree of psycho-emotional and psychosocial regression.
The individual needs support at this stage of adjustement, even after, the family environment as a rule is invaluable because they are better acquainted with patient’s personality and habits. Therefore, they are able to provide the proper care. During this process however, the patient needs to be allowed or urged to exercise his abilities in full and have the right of choice so as to be able to maintain privacy, independence, self-esteem, self-efficiency and dignity. Gradually, patients need social interaction outside the family, need to keep up with recent events, need for recreation and work.
Financial support and allowances
The above can be succeeded only if there is adequate financial support and offered allowances and opportunities in education and empoyment by the community or the government. The community needs to be aware of the disabled’s special needs and provide appropriate support and acceptance1.
All the above factors or dimensions help the disabled individual to preserve self-esteem, maintain a quality of life socially, physically, mentally, emotionally and spiritually and be actively contribute to community. Spirituality has a special significance for quality of life and includes, besides religion, meditation, travelling, love for nature, reading, learning, music and arts.