Before Donna got her diagnosis, she thought of herself as a musician, a busy professional, a volunteer, a mother, a grandmother. After she got her diagnosis – Parkinson’s disease, at age 58 – she thought of herself as a patient. The time she used to spend engaging in the things that gave her life meaning was eaten up by doctor’s appointments, diagnostic tests and constant monitoring of her symptoms, her energy, her reactions to medication. Her sense of loss was profound and undeniable.
Unfortunately, Donna’s experience is all too common. Heart disease, arthritis, multiple sclerosis, diabetes, depression, cancer, asthma, Crohn’s disease, cystic fibrosis, autoimmune disorders, fibromyalgia, chronic fatigue syndrome, Lyme disease: the list goes on. I would guess that most people know someone close to them who is suffering from one of these debilitating chronic conditions, if not struggling with a diagnosis themselves.
Globally, three in five deaths are attributed to one of four major diseases – cardiovascular disease, chronic lung conditions, cancer or diabetes. Moreover, approximately a third of adults suffer from multiple chronic conditions, wreaking untold havoc on healthcare systems and economies across the globe. In developed countries, it might be closer to three in four older adults who suffer from multiple conditions.
The proportion of patients with four or more diseases is expected to almost double between 2015 and 2035 in the UK alone. Frighteningly, these statistics don’t even account for chronic illnesses in children, which are on the rise. In sum, this means that billions of people are, at best, not functioning at their highest level and, at worst, are severely debilitated, living limited lives, and requiring chronic medical care.
The bigger questions of how to prevent these illnesses or resolve this global health crisis are beyond me. I am not an epidemiologist, public health expert, economist or even a physician. However, as a clinical psychologist, I see many people trying to navigate the daily vagaries of chronic afflictions.
I’ve worked with people who have been diagnosed with various forms of cancer, Parkinson’s, cystic fibrosis, Lyme disease, obesity, all manner of cardiovascular diseases, multiple sclerosis, brain injuries, paralysis and many other illnesses. Naturally, I also see people on a regular basis who are dealing with chronic mental health issues, such as depression, anxiety, trauma, bipolar disorder and so forth.
The causes of these conditions are varied and multifaceted. The underlying factor for all of them, however, is that, in the absence of a cure, people want to live the best life they possibly can, regardless of their affliction or disability. While each person and each condition presents its own set of challenges, there are some unifying principles in helping people who are suffering from chronic illnesses to live better, more meaningful lives.
In my practice, I approach these issues from a therapeutic perspective known as acceptance and commitment therapy, or ACT (said as the word, not the acronym). I encourage anyone dealing with similar issues to learn about this approach, as it has been helpful to my clients and countless others.
Generally, living as rich and meaningful a life as possible when you are struggling with a chronic illness requires a great deal of psychological flexibility. With chronic illness, rigidity in your thinking and behaviour is the greatest barrier to living well with your illness.
The only thing you can count on is the fact that you never really know what your day is going to look like, and that things are always changing. How are you going to feel today? This morning? Later this afternoon? What will you be able to do? How much rest will you need? How clear will your head be? How much pain will you have at any given moment today? How bad will the medication side-effects be? Planning – for anything – can be an excruciatingly difficult task and, since we are typically creatures of routine, we hang on to those routines as much as we can.
This is generally a good thing – we like structure and predictability, but chronic illnesses can make this quite challenging, and sometimes impossible.
Psychological flexibility is the idea that we need to be present with what is happening right now, free of judgment, and to respond in a way that moves us forward rather than getting stuck in the emotions or feelings of the moment – anger, frustration, sadness, pain and so forth. While becoming more psychologically flexible might seem like a daunting, if not impossible task, it is not a talent available only to a select few. Rather, it is a skill, and any skill can be learned by just about anyone with enough practice.
Below are some approaches that you can use to help you increase your psychological flexibility and, I hope, help you live a more meaningful life, even if you have a chronic illness. These are the same things I try to help clients such as Donna do in our work together, and I like to think they’ve found them useful in navigating through the darkness of chronic illness. If they resonate with you at all, I recommend doing some further reading on ACT and maybe working with a professional ACT therapist to help you live the best life you possibly can.