MS develops in so many different ways and has such a wide variety of symptoms that it could be called the illness with a thousand faces. From the moment the first symptoms appear, the individual faces many emotional challenges, perhaps the first one being uncertainty.
Knowledge about what causes this disease, as well as exactly what triggers a relapse, is currently incomplete. Although we know that many people will follow a relatively benign course of MS with many disability-free years, there is still no certainty, for any individual, as to the course the disease will take. Despite this basic uncertainty, hearing that they have MS provides a certain sense of relief for many. Finally they have a name for all of the different symptoms they have been experiencing. The diagnosis also confirms for the individual that all of his or her ailments have not been imagined, but stem from a verifiable, recognised disease.
However, for most of those affected, the diagnosis also comes as a great shock. Many people newly diagnosed find themselves asking “Why me?” and “What will happen to me?” With a disease like MS these questions are especially difficult to answer.
On hearing the diagnosis for the first time, many react by feeling as if they are losing control over their lives. Even if the symptoms disappear after a relapse, the unpredictability of MS can mean a life of worry and anxiety about the future. It is normal for such extreme emotions to generate anger, but also sadness and fear. It is also a normal reaction for some people with MS to try to ignore the disease’s presence in their lives, while others will actively seek out information about MS from the very beginning.
Coping and personality
People react very differently in times of crisis, but most have one thing in common: the capacity to tap into resources of strength and activate strategies for coping. Based on life experiences, people develop certain resources as part of their personality. This includes, for example, an optimistic outlook or the deeply rooted belief that one can master any crisis. For others, who have developed a generally pessimistic view of life, feelings of helplessness and powerlessness may predominate when they learn their diagnosis. Studies in a number of illnesses have shown that these fundamental beliefs have an influence on a person’s quality of life, their health and on how actively they participate in the management of their disease.
Although personalities, thought patterns and attitudes are relatively consistent, professionals can help people to develop new coping skills. For example, a psychologist can help a person build confidence, motivating the individual to take a more active role in managing the disease, whilst a professionally-run workshop can teach valuable techniques for dealing with MS.
Living with uncertainty
Coping means learning to live with the uncertainty that is characteristic of MS. Effective coping depends, in part, on maintaining one’s self-confidence, particularly the belief that one will be able to face the daily challenges of MS.
The importance of being informed
In order to regain or maintain a feeling of confidence and of having some control over one’s life, it is very important that the person with MS becomes informed about the disease. Gathering information, talking to others affected and asking MS professionals questions are ways in which a person develops a great deal of knowledge about MS. People can also gain a sense of control and actively participate in making healthcare decisions by being aware of the treatments available, symptom management strategies, legal and financial rights, self-help groups and other support resources.
People with MS who have a desire to learn more about their disease may need guidance and suggestions about appropriate sources of information. In addition, people who are newly diagnosed may prefer to choose specific topics that are relevant to their current situation. The healthcare professional providing this type of advice should understand something about the person’s lifestyle and individual needs. No two cases of MS are the same and hence people’s information needs vary. Some may prefer to speak to MS specialists, while others may prefer to contact MS society help-lines or participate in mutual support groups. Others may prefer publications that allow them to absorb information in their own time, and which can be put aside for later reference. More recently, the Internet has become an important and popular source of information. However, not all websites are equally reliable. Many MS societies have their own websites that offer up-to-date, independent information and can usually recommend other, reliable sites that can be useful for people looking for information about MS.
Balancing hope and realistic expectations
Hope plays an important role in coping with any illness. It is a source from where those affected draw their strength, optimism and energy. However, it is not always easy to strike a balance between being hopeful and maintaining realistic expectations. Unrealistic expectations can lead to bitter disappointment, especially when a certain treatment or therapy does not provide the expected result.
Such unrealistic expectations can result from misinformation being provided to the individual, a lack of understanding of the therapy’s capabilities, or from an especially strong desire to believe that the therapy will be able to do something that it is not actually intended to do or is capable of doing.
For these reasons, it is vitally important for the person to have appropriate education and information before beginning any treatment or therapy in order to avoid disappointment caused by unrealistic expectations. It is also worth mentioning that unrealistic expectations can cause some people to decide to interrupt a therapy regimen before its full effect can be realised.
Decision-making
MS rarely forces anyone to make precipitate decisions. An acute relapse or other crisis is seldom the right time to make important or far-reaching decisions. However, it is during these difficult times that a person with MS is more prone to making life-altering changes, for example, deciding to leave the workforce while experiencing an MS relapse.
Healthcare professionals should encourage newly diagnosed people to seek support during times of crisis in order to avoid the mistake of impulsive decision-making based on anxiety and fear. The person with MS may wish to talk to those they are closest to, or those who are directly affected by their choices, to help with the decision-making process.
Stress
Each person defines stress in his or her own way. What is known about the relationship between stress and MS is incomplete. We do know that a person’s level of stress is higher during MS relapses. It appears that stress has a negative impact on well-being and poses a risk to a person’s health and relationships. Receiving a diagnosis of MS is a major source of stress for anyone. The unpredictability, dealing with various symptoms, learning new information and changing roles are just some of the many other sources of stress that accompany the diagnosis.
There are ways of successfully coping with the problems of day-to-day life that will diminish feelings of being overtaxed, frustrated and angry. It is important that people with MS are not encouraged to make important changes in life based on the notion that stress worsens MS and therefore should be avoided. Rather, strategies for reducing stress, which also vary from person to person depending on one’s lifestyle, should be recommended. These may include physical activity, pursuing a hobby, relaxation techniques, self-help groups, etc.
The family’s emotional experience
Partners, children and other family members experience their own emotional uncertainties and feelings of powerlessness when confronted with a diagnosis of MS. Those closest to someone with MS may have similar emotional experiences to the person who has received the diagnosis, such as the desire to ignore the presence of MS in the family, unrealistic expectations regarding therapies, daily stress related to living with the disease and challenges to effective coping. They too can benefit from learning about MS and talking with other families who are also dealing with the disease. One of the most important resources for all involved is mutual support. Having relationships based on trust and open communication within the immediate and extended family, as well as social circles, can really help.
The emotional challenges faced by a person who is coping with a diagnosis of MS vary and do not necessarily follow a standard order. Although denial, anger, stress and anxiety are common emotional reactions, the order in which they are experienced, as well as how much time an individual requires to come to terms with each of these, depends on the person’s previous coping style and the support he or she has from healthcare professionals, family and friends.
One important role of healthcare professionals is to help people recognise and effectively manage the emotional challenges that accompany the diagnosis of MS, teaching coping skills that can be useful not only early in the disease but also over time.
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