Living with any illness, especially a chronic illness, can be challenging. One may have to battle with numerous symptoms, side effects, and impairments on a regular basis, all of which can make carrying out even the simplest task difficult.
Experiences such as this can, understandably, impact on what is often referred to as a person’s quality of life.
Interestingly, many people who are diagnosed with chronic illness cope well with their conditions in spite of considerable physical limitations. Others, who may be deemed more physically healthy, report having a far lower quality of life. At the Department of Psychology in Maynooth University, we are interested in exploring why this may be the case.
Firstly, it is important to point out that, when considering how "well" a person is, we must look at more than just their physical health status. Instead, it is crucial to also consider a person’s psychological wellbeing.
A diagnosis of a chronic illness, while leading to feelings of relief in some, can give rise to the experience of distress in others. In particular, people may report a number of fears and worries relating to their illness. These responses may be direct reactions to the uncertainty that goes hand-in-hand with a new diagnosis.
We all know that coping with any form of uncertainty is difficult. In everyday life people are continually motivated to resolve uncertainty by seeking out information (a mundane example might be skipping on to the next episode of a boxset to find out what happens next) but in the case of illness, this is far more difficult.
For example, take multiple sclerosis (MS), a condition associated with a significant degree of uncertainty regarding long-term prognosis and disease course, and one which may require a considerable amount of psychological adjustment on the part of the patient. As evidence of this, recent research suggests that healthcare professionals regularly avoid discussing long-term prognosis with MS patients, despite the vast majority expressing a desire to receive such information.
In the quest to resolve feelings of uncertainty, patients may be motivated to seek out information elsewhere - often online - which may exacerbate their fears even more. This, of course, is a common response regardless of one’s aliment.
When was the last time you turned to Dr Google to try and explain a niggling health problem, only to self-diagnosis yourself with a life-threatening condition? Such behaviours may more generally perpetuate the experience of what is known as "health anxiety".
Upon an MS diagnosis, patients may have numerous questions including: "What will happen to me in the future?", "Will I end up in a wheelchair?", "What if my treatment doesn’t work?", or "Will I be able to have a family?" However, often patients may not feel comfortable articulating such fears to treating clinicians.
We also know that fears can be present even after successful treatment of disease. A good example of this is the phenomenon of "Fear of Recurrence" in cancer. Along with other researchers in the area, we have shown that such fears are common in cancer survivors and that they can persist long after treatment, even when the objective clinical risk of recurrence is extremely small.
Such worries are also experienced, even more intensively, by family members of survivors, showing how coping with illness uncertainty can extend far beyond those directly affected.
By definition, fear is a type of "future-oriented cognition", and a good example of how our thoughts about the future can impact on our current wellbeing. Every day, we form expectations about what may happen.
As humans, however, we are often not good at making predictions, and our expectations can be swayed by our emotions. While fear is what we might term a negatively-oriented expectation, expectations can also be positively-oriented. For instance, the phenomenon of "hope" implies an expectation of some positive outcome.
Just as studies have shown that fears are associated with lower wellbeing among people, others have demonstrated how hope and optimism are associated with higher wellbeing. Indeed, in recent years a field known as "positive psychology" has been gathering strength.
Work in this area suggests that identifying ways to increase optimism and other positive psychological traits such as resilience may offer a means of helping people cope better with illness.
At a more basic level, this relates to the well-established phenomenon of the placebo effect. Specifically, if a patient expects to get better (e.g. they believe they are receiving an active treatment), they will experience at least some improvement. Conversely, the lesser-known "nocebo" effect implies that if a patient is expecting to experience negative side effects from a treatment, they are more likely to report these later.
Given that the number of people living with a chronic illness is rapidly increasing, uncovering ways in which their quality of life may be maintained is vital.
Along with others, our emerging work suggests that expectations and thoughts about the future can have a powerful impact on people’s wellbeing. This suggests that a key challenge for those working to support patients is to establish how best to appropriately address their expectations.
Empowering patients to interpret and critically appraise information about their own condition may be one way in which this could be done. Crucially, it is vital to listen and acknowledge patient’s worries about the future, as well as their individual needs for information.