Dr. Ingela Thuné-Boyle
Quality of life in chronic illness: What is it and why is it important?
When discussing a patient's health status within healthcare and clinical practice, we often talk about the concept of Quality of Life but what do we actually mean by that? I thought I'd write a general summary about four broad domains of quality of life that tend to be important for people living with a long-term illness (or with chronic physical symptoms) but please keep in mind that these areas can be extremely complex and this is just a very brief summary of each domain.
Health Related Quality of Life (HRQoL) consists of at least four broad domains that can affect or be affected by one's condition and/or treatment: physical, psychological (including the behavioural), social and spiritual functioning. Physical functioning refers to the ability to perform activities of daily living, as well as physical symptoms resulting from the illness itself or from treatment. The psychological domain refers to the impact an illness has on people's emotional well-being. It may also refer to cognitive aspects; people's understanding of their illness, their attitudes, values, motivations, coping strategies, their intentions and expectations. The behavioural aspect looks at how behaviour can impact health and well-being through, for example, unhealthy habits or coping behaviours. The social domain refers to cultural influences to health, the environment people live in, their socioeconomic status, family relationships, their relationship with their health care professionals and social support. The spiritual explores people's sense of meaning and purpose or religious beliefs and coping strategies. Adjusting to an illness is a process that begins when symptoms first appear, continues throughout the course of the illness and responds to changes in your illness across time. HRQoL is a very subjective experience and is different for each individual. These domains also tend to interact, go hand in hand or influence each other in many different ways. Indeed, the path to improved quality of life can be complex. That's why Health Psychologists consider all known factors that may drive health related adjustment and well-being in long-term illness, and that is also why I usually take a holistic, flexible and integrative approach to therapy that adapts to the unique needs of each specific client, as opposed to using one therapeutic method alone. So, let's look at each aspect in more detail and where psychological interventions or therapy might help.
Although physical well-being is primarily looked after by a medical physician, a health psychologist can help improve physical well-being by, for example, focusing on pain management. Indeed, many people with a chronic illness also live with pain and managing pain can be really hard at times. Pain can also be very unpredictable. How many of you haven't had to cancel plans because of unpredictable pain flare-ups? Chronic pain can be very stressful bringing with it a multitude of emotions such as anxiety, frustrations, despair and depression. Depending on its cause, chronic pain is often targeted from different angles; medication, medical interventions (e.g. radiofrequency ablation, Botox, ultrasound), complimentary therapy (acupuncture, massage) and physical activity (e.g. physiotherapy, yoga) but also by providing pain education (how pain works), exploring coping strategies, adding stress and behaviour management approaches and social support. However, adding psychosocial approaches to pain management doesn't mean your pain is 'all in the head'. All pain is real! Some pain may never go away completely but it can be reduced significantly or managed better through this approach. Overall, the aim is to restore daily functioning and minimize the many consequences of pain on your quality of life. Fatigue in chronic illness is very common and experienced by up to eighty percent of patients. Despite this, physicians often ignore symptoms of fatigue due to the lack of therapeutic treatments available to them. They may also attribute fatigue to depression and that may be the case. However, many other features of chronic conditions may contribute to fatigue, including muscle weakness, pain, anxiety, disturbed sleep, the very nature of the illness itself (e.g. a disorder of the lungs, ME/CFS etc.) or its treatment (e.g. chemotherapy). Depending on your illness, health psychologists can help to reduce fatigue in a variety of ways by targeting some of the above areas. For example, encouraging good sleep hygiene may be vital as too little sleep harms the brain and can make physical and psychological symptoms worse. Physical wellbeing may indeed be determined by peoples' behaviour. For example, someone with type II diabetes may have a hard time sticking to a recommended diet or adhering to their medications, and may, as a result, end up with some pretty serious, and even life threatening, health conditions such a kidney failure, heart disease or leg ulcers. Indeed, health psychologists help people explore what prevents or motivates them to follow doctor’s instructions; to eat a healthier diet, move their bodies etc. In short, how to achieve behavioural change and thereby improved physical health and a better quality of life.
For most people, living with a chronic illness is a stressful experience. The psychological aspect of HRQoL refers to emotions such as anxiety, depression, anger, grief, shame, guilt, self-esteem and so on. It may also refer to the cognitive aspects such as health related beliefs, attitudes, values, motivations, coping strategies, intentions and expectations and these are, in turn, linked to your emotional well-being and quality of life. Having to face future uncertainties, deal with pain that never seems to get better, or perhaps not getting the care that you need, is pretty stressful. Living with anxiety when facing daily health struggles can be very debilitating, especially if you end up isolated from friends, are unable to meet work commitments or don't have a very good support network. You may feel like you've lost all meaning or purpose in life. You may have chronic pain that you find hard to manage, a relentless fatigue and brain fog. You may feel very angry about your lot in life. Indeed, people with chronic illness often have a lot to be angry about! You may constantly come up against people who show little understanding of your problems or you may turn the anger inwards, blaming yourself for your difficulties. Anger can be a helpful motivator, yet, it can also make pain seem more intolerable. Finding ways to manage stress and cope effectively with these emotions is therefore important. People don't often associate chronic illness with grief but the realization that life will never be what it was, and the future is not what you thought it would be, is a major loss. Any dreams you may have had and any plans you might have made have fallen on the wayside. No one has died, yet that's grief, right there! Grief is a normal part of living with a long-term illness and is not something that goes away a few weeks after diagnosis (and a diagnosis can sometimes be a relief for some) but can be a resurfacing cloud that surrounds you as life takes you in a direction you never wanted to go. Grief is something you may have to revisit and process many times as the years go by, perhaps when faced with new health challenges and symptoms.
Health psychologists also explore the behaviour of an individual in relation to their physical health and symptoms. Some behaviours are simply unhelpful habits and these can determine how well people adjust to their condition and physical symptoms. As mentioned above, someone, for example, with type II diabetes, may have a hard time sticking to a recommended diet and may, as a result, end up with some pretty serious, and even life threatening, health conditions. Another with cardiovascular disease may continue a sedentary lifestyle despite knowing that it's detrimental to their wellbeing and longevity. Indeed, health psychologists explore what prevents and motivates people to change behaviours like eating a healthier diet, moving their bodies or following a doctor’s instructions. Basically, we work with some clients to achieve behavioural change and thereby a better overall health status.
Some people with chronic illness or with distressing physical symptoms may have also experienced trauma in their lives, either as a direct result of their illness or at a previous point in their lives. Ongoing childhood abuse, for example, has been shown to correlate with ill health in adulthood. While the causality between childhood adversity and adult chronic illness has yet to be fully determined (and is likely to be very complex), researchers now have enough knowledge about the way chronic stress impacts physical health to make some educated guesses about their potential link. For example, when we are threatened, our bodies have what is called a stress response, which prepares our bodies for fight or flight. However, when this response remains highly activated in a child for long periods of time, and without the calming influence of a supportive parent or adult figure, toxic stress occurs and can damage crucial neural connections in the developing brain and perhaps also affect the developing immune system. According to Harvard’s Center on the Developing Child, the impacts of experiencing repeated incidents of toxic stress as a child "persist far into adulthood, and can lead to lifelong impairments in both physical and mental health."
The fact that childhood adversity is so closely intertwined with adult illness does not mean that those physical symptoms are not real or valid. The biological impacts of childhood adversity are not only real, but can be very difficult to completely undo. Indeed, processing traumatic childhoods in psychotherapy, although important, will probably not automatically cure any physical ailments (which is why I put this paragraph in the 'psychological' section and not the 'physical'). It may nevertheless help people understand themselves better and learn how to react to, and manage, stress and physical symptoms in a more efficient way - how to better regulate their emotions during difficult times. Adverse childhood experiences and chronic illness in adulthood is a really complex area with many unknowns and because of that, I'm going to dedicate a separate blog post to this issue in the future.
Social support is a very important stress buffer but when people get ill, they often lose friends and the support network they once had may get smaller and smaller. This can cause an unbearable sense of isolation and loneliness. Finding other avenues of emotional support is possible especially with access to social media. Others may take advantage of support groups and fortunately, these are now also available online. Some prefer more one-on-one work and benefit greatly from the support of a psychologist or therapist. Practical support may be harder to find as it often involves actual help from people in person, perhaps with shopping, cleaning the house or help with childcare during difficult days. Indeed, our relationships may affect our quality of life in significant ways during illness and improving access to support is important.
It's also important for doctors to make meaningful connections with their patients but this doesn't always happen. Indeed, you may experience what is often referred to as medical gaslighting; a tendency for some doctors to dismiss, minimize or undermine a patient's health problems (I've written about this in more detail here). This can be very damaging in so many different ways, both physically and psychologically. Indeed, with poor medical management, your sick leave at work might be mounting up and you may experience a whole host of different emotions including shame. Unfortunately, you can't control how well your health care professionals communicate and support you, but you can control how you approach and communicate with them and also how you respond and recover from difficult and stressful interactions. Indeed, you can increase your resilience by learning how to manage your anger and frustrations and finding other avenues for problem-solving and medical support.
Meeting people's spiritual needs is not just important during a palliative phase of an illness. Anyone experiencing life challenges may have spiritual needs. Spiritual distress is the most neglected form of distress within both health care and psychology yet it is just as common as any other form of adjustment. It can take many different forms from lacking in meaning and purpose to a more religious expression where a higher power is seen as punishing and judgmental. Other factors such as self-compassion, forgiveness and letting go has also been labelled as spiritual (but you can label them as psychological or existential if you're not spiritually inclined). You may have been treated badly by health care professionals or even family members and quite understandably, carry resentments as a result. However, our lives are so much better with less of a burden to carry on our shoulders and dealing with these through various spiritual practices may be really helpful for some. Depending on your circumstances, it may even be possible to re-frame your illness as spiritually life transforming by focusing on the personal growth you may have experienced as a result of your illness. Further, various benefits may have occurred since your diagnosis (e.g. becoming closer to your family, writing a popular blog about your experience, mentoring others etc.). Indeed, even in the midst of misery, it's sometimes possible to find something to be grateful for - suffering and gratitude are not mutually exclusive! However, it's important to remember that there's a time and place for gratitude, benefit finding and stress related growth; it isn't suitable for everyone's situation.
I've only given you a very brief and simplified snapshot of issues you may recognize but, hopefully, it has given you a better understanding of what health related quality of life is and an insight into the types of issues a health psychologist can help you with. Indeed, it takes good self-management skills and a supportive environment to live well with long-term health problems, but when we are able to process our losses and better tolerate feelings of distress; when we can apply different and better serving coping strategies; when we can make pain seem more tolerable; when we can find meaning and purpose in our lives despite obstacles and broken dreams, our quality of life improves. Of course, having good medical care is also important; being on the right medication, having an understanding and kind physician, meeting the needs of our physical body with exercise, stretching, a good diet, sleep and getting the supportive environment that we deserve. It's a game of multitask!
People living with a long-term illness stare vulnerability in the face on a daily basis and that takes a lot of courage. Indeed, people with a chronic illness are extremely courageous in my opinion, even if you're having a hard time adjusting to your illness, but with some long-term dedication and support, you can get to a point where you can better weather the storms of difficult days and actually enjoy the good days when they are not dominated by worries, frustrations, stress and anger. It is possible!
How has chronic illness affected your quality of life? Please leave a comment below. If there’s something important you’d like to add that I didn't mention, please do so. I'd love to hear from you.
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Dr. Ingela Thuné-Boyle is a licenced Practitioner Health Psychologist specializing in stress and loss, especially in improving the quality of life of people living with long-term health problems and/or chronic pain. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder, and runs a private online (telehealth) practice at www.ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results following their information and advice on this blog.