Quality of Life
Health Related Quality of Life (HRQoL) in chronic illness is a multidimensional construct that consists of at least four broad domains that can affect or be effected 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 aspects 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. 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-up's? Chronic pain can be very stressful bringing with it a multitude of emotions such as anxiety, frustrations, anger and depression. Pain is often made much worse by the stress of living with a long-term illness. Anxiety and anger most certainly make pain seem more intense. Some less helpful coping strategies can also exasperate the situation (e.g. doing too much on a good day or resting too much from fear of aggravating the pain).
Chronic pain is best targeted from different angles; medication, medical interventions (e.g. radiofrequency ablation, botox), complimentary therapy (acupuncture, massage) and physical activity (e.g. physio, yoga) but also by providing pain education (how pain works and how we can use that knowledge to actually change the perception of pain), exploring coping strategies, adding stress and behaviour management approaches (e.g. Acceptance and Commitment Therapy, Cognitive Behavioural Therapy, Motivational Interviewing), visual imagery and mindfulness techniques among other things. However, adding psychological approaches to pain management doesn't mean your pain is 'all in the head'. Far from it! The pain may never go away completely but it can be reduced significantly and managed better through this approach and remain at a more acceptable level. Basically, it's about re-training your brain to respond more appropriately to pain signals (yes, it can be done). 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 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 and disturbed sleep. Depending on your illness, health psychologists can help to reduce fatigue in a variety of ways by targeting these areas.
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.
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 and depressing, 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 worse 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! Grieving 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/psychological symptoms. Health psychologists also explore what motivates people to eat a healthier diet, move their bodies or follow a doctor’s instructions about medications and follow-up visits.
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 lonliness. 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 involves actual help from people in person, perhaps with shopping, cleaning the house or help with childcare during difficult days.
It is important for doctors to make meaningful connections with their patients but this doesn't always happen. Indeed, I was once told by my GP that I was anxious but not aware of it ('medical gaslighting') when all I was trying to do was to find out why on earth I was feeling so unwell and tired. Seemingly, going to the doctor multiple times was, in his eyes, a sign of anxiety. But instead of trying to work with me and to problem-solve, I ended up not getting the support that I needed which then became an anxiety inducing situation filled with frustrations and irritations!
Although you can't control how well your health care professionals communicate and support you, you can control how you approach and communicate with them and also how you respond and recover from difficult and stressful interactions. In my situation, I had to learn to manage my anger and frustrations and find 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 and forgiveness has also been labelled as spiritual (but you can label them as psychological if you're not spiritually inclined!).
You may have been treated badly by health care professionals and quite understandably, carry resentments as a result but our lives are so much better with less of a burden to carry on our shoulders. That's where practicing forgiveness or 'letting go and let be' come in handy. We may also be really hard on ourselves and the mistakes that we make so we may also need to forgive ourselves and be more compassionate towards ourselves and how we handle things.
Even in the midst of misery, it is possible to find something to be grateful for even if it doesn't seem like it (however, it's important to remember that acknowledging our negative feelings, and learning to become more tolerant of them, is just as important). And 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 or the potential benefits that may have occurred since your diagnosis (e.g. becoming closer to your family, writing a popular blog about your experience, mentoring others etc.).
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 acceptance in a new normal is a process but it's so worth the effort! And when we are able to accept or reduce 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!