For anyone, getting sick can be both a physically and psychologically challenging experience. In most cases, it seems as simple as that with diagnosis comes treatment and a resolution of the immediate threat. End of story.
But what if the diagnosis is one of a chronic disease?
Chronic disease is, by its very definition, incurable. With an unpredictable course and, most likely, a high degree of uncontrollability, the illness gets to stay. Gone from something that needed to be dealt with momentarily to something that will be an omnipresent influence for life.
How do people deal with that?
Remember that change is an integral part of life. Viewing a chronic illness diagnosis as just another of life's transition to which adaptation is necessary can be helpful. Adaptation means facing and acknowledging the experience of the illness and the emotional effect it may arouse. What does the illness represent? What impact does it have on life? What is its psychological impact?
The challenges of chronic illness
Following diagnosis, people often struggle with self-image. Sometimes, individuals even say that they feel they ceased to exist and simply became their illness. Undoubtedly, chronic illness can impact considerably on the way people view themselves. The physical changes inherent with illness and the emotional responses to them can assault the sense of self, requiring the individual to re-evaluate who he or she is.
Chronic illness can also raise issues of control, unhelpful emotional responses, concerns about how others might perceive the individual and issues of isolation and abandonment.
Strategies useful in coping with chronic illness
Reassessing a sense of self
Taking the time to identify what has changed since diagnosis can be useful.
What changes have occurred physically? Emotionally? How have priorities changed?
Are these changes likely to be short term or more permanent in nature?
Answering such questions provides a basis for reformulating self-image.
Particularly important is an examination of perceived losses. Acknowledging losses and grieving accordingly allows the individual to move forwards.
Following on, self re-evaluation helps with the reconstruction of self-image. A useful exercise consists of listing personal strengths and weaknesses with the aim of developing a sense of self to reflects those strengths. The focus should be on what can be done, as opposed to what is no longer possible.
Doing things that promote pleasure can boost self-esteem. Setting some short term goals related to new activities or opportunities is a good idea. However, it is important to ensure that expectations are realistic and take into account any possible limitations. In setting goals that are obtainable, a sense of mastery is increased.
While control over what is happening in physical terms is limited, it is possible to choose the way the situation is dealt with. The nature of the response is critical for just as physical health can affect the way the individual feels, emotional response can also impact on physical health.
Evaluating what can and cannot be controlled frees up the individual to relinquish what cannot possibly be influenced.
For some, it can seem that the illness takes control. Life becomes a series of medical appointments, treatments, behaviour may become restricted in line with the demands of our illness. Becoming an active participant in the process of health care can lessen that feeling. It is therefore important to be ready to ask questions, discuss treatment options, make informed decisions, where possible, and follow the treatment regimen.
Dealing with the emotional consequences
It's a natural response to experience negative feelings in response to illness. Common thoughts relate to unfairness ('why me?') and hopelessness ('life will never be the same again'). Expressing such emotions is important. Giving voice to them helps with dealing with them. Over time, as the illness is acknowledged and ultimately accepted, these feelings should diminish.
This is where monitoring feelings can be informative. Noting the experience of negative thoughts and interpretations of events helps to gain an understanding of what triggers them. In this way, it is possible to gain an insight into thought processes and identify a more reality based alternative. For example, a common thought in the context of illness might be that 'life is over'. That representation of life with a chronic illness is not based in reality. Life is not 'over', it's just 'different'.
Again, feelings of anger often appear following a diagnosis of chronic illness. Examining those feelings, gaining an understanding of where that anger is directed and appraising how much those feelings are based in reality can help with anger resolution.
Similarly, reflecting on past dealings with anger can provide valuable information on how to deal with it in the current situation.
People often look to their past behaviours to find causes for their illness. There's a myth about chronic illness that the person diagnosed must be responsible for their illness. Of course, risk behaviours have been associated with some chronic illnesses but this does not necessarily explain the appearance of a chronic disease in any individual. It is pointless to burden oneself with self-anger regarding the past. More important is to take responsibility for the future.
Finding appropriate ways to release anger is a good management technique. Some people choose to find alternative uses for that energy, some prefer to express their anger through creativity.
Identifying the things in life that are causing stress and exploring different ways to reduce their impact can help with the goal of stress minimisation.
Building on personal resources can improve protection against stress. Working on improving coping skills is useful. Enlarging the support network is also a good idea. Joining a support group associated with the chronic illness can be beneficial. This facilitates meeting with people who share a common experience. Additionally, such organisations are usually a good source of information regarding the specific medical condition.
Find ways to improve relaxation. What works for each individual varies. Experiment with different strategies including meditation, visualisation, prayer, exercise such as yoga and more formal relaxation techniques such as breathing exercises and progressive muscle relaxation.
Taking stock of dependency across various areas of our life can be confronting but it is important to acknowledge the emotional impact of this feeling.
Key is trying to find a balance between what an individual can do for his or herself and what he or she needs others to do. 'Soldiering on' can be counterproductive. It is important to be realistic and acknowledge limitations.
A sense of dependency can be reduced by finding a way to give to others and participate in their lives.
Isolation and abandonment issues
Be aware that heightened sensitivity to the reactions of others is commonplace. It is critical to be careful of misinterpretation in communication with others, particularly with family members.
Being open about fears of abandonment and isolation with family and friends can be difficult. However, most people will be appreciative of the concern. Sometimes people may fail to include people with a chronic illness out of misplaced concern. It is important for the individual to let people know that he or she wants to be included.
Hard as it, it is important not to withdraw from people and to stay emotionally involved with family and friends.
Sensitivity to the needs of family and friends also needs to be taken into consideration. They may also be experiencing difficulties in relation to the diagnosis. Expectations regarding others need to be realistic.
Again, participating in a support group can generate new friendships. For those who are severely restricted by their condition, online support groups can provide a degree of contact to the outside world.
While some past activities may no longer be possible, be open to exploring new interests.
Dealing with the stigma of illness
Unfortunately, there can sometimes be a stigma associated with having an illness. Past treatment of others with an illness or disability can provide insight not only into how others respond but also into the distress experienced subseqent to diagnosis. Having a chronic illness diagnosis can help to confront and resolve individual distortions of disabilities.
When encountering negative feedback from others, it is important not to personalise their words or behaviours. Although difficult, the best response is an educative one. For example, it might help to explain "I do things this way because...."
Humour is a great coping mechanism. Finding ways to laugh at difficult situations can help discharge negative emotions.
It would be great if coping with chronic illness was as simple as mastering all these strategies. However, chronic illness is an ongoing process and subject to fluctuations in severity. Just when things seem to be under control, along may come a period of deterioration that may provide further challenges. So, remember, that a journey with chronic illness will be one of continual adjustment.
I. Pollin and S. Golant. (1994). Taking charge: Overcoming the challenge of long term illnesses. New York: Times Books.