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Dr. Ingela Thuné-Boyle
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Quality of life
Quality of Life
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 relative well-being can be complex and health psychologists know this. That's why we consider all factors that may drive health related self-management, 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 method alone. For more detailed examples, read on!
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, anger 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 and 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. For more on my approach to chronic pain, click here.
Fatigue in chronic illness is very common and experienced by up to 80 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 or 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.
Physical wellbeing may also 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. Or maybe you're having a hard time adjusting to treatments or recovering from surgery. 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 and can affect you in so many other less helpful ways. To improve your quality of life, finding ways to 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 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 (e.g. chronic pain) 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 sometimes be a challenge to completely undo. However, with some hard work, it’s well worth processing trauma through therapy and learn how to react to, and manage, stress and physical symptoms (e.g. pain) in a more efficient way - how to better regulate emotions during difficult times.
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.
It is 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. 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. Indeed, Viktor Frankl (neurologist, psychiatrist and holocaust survivor) once credited Nietzsche's words; "He who has a why to live for can bare almost any how."
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 snapshot of issues you may recognize here but, hopefully, it it has given you 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 a long-term illness. Finding meaning and acceptance in a new normal is a process but it's so worth the effort! And when we are able to accept and tolerate feelings of distress whether it's anger, anxiety, depression or all three, 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 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! (For more information on my approach to therapy and what to expect, click here.)
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