How can psychology help us to treat long covid? (Part two of two)
You might have caught part one of this blog piece two days ago, where I introduced the subject of long covid. To recap, I am an Assistant Psychologist currently working in a long covid clinic in South East London and I wanted to share some of my experience in this new and challenging field.
In my previous blog I did my best to portray what the long covid experience is like for some patients, without having personal experience of long covid myself. I touched on the importance of a multidisciplinary approach to treatment and introduced some of the ways that psychological interventions can be used to help.
If you did catch my blog , thanks for returning! And if not, you can check out what you missed here. Part two today will focus on more of the psychological difficulties that are commonly experienced by long covid patients and the different ways we can support them.
Managing Loss and Transition
Many patients with long covid are forced to reduce their activity levels, give up much loved recreational activities and adjust to a totally new “them”.
Significant feelings of grief can accompany this process as the patient temporarily loses aspects of themselves which were previously valued, such as their identity as a parent, employee and/or partner. Some patients I have met with describe how they suddenly feel like a spectator rather than an active part of family life.
Family members may experience loss as well, as they are deprived of part of the companionship the patient used to provide, as well as their work around the house and possibly also their financial contributions. Family members also have to adjust their visions for the future and grieve their own losses.
In clinic, techniques from Acceptance and Commitment Therapy (ACT) can be used to help patients and their families adjust to this “new normal”.
An important part of psychological adjustment is acceptance, an acknowledgement that life has changed at least for now. Acceptance does not mean resignation, but instead a recognition that life has changed and a commitment to live the best life possible under the circumstances. ACT is a form of Cognitive Behavioural Therapy which can help individuals to have a clearer sense of purpose based on their own values and what is important to them, to learn to accept aspects of the situation that cannot currently be changed and to take committed action to change what can currently be changed. ACT can help to improve an individual’s quality of life by encouraging them to try different ways of doing things and to be less affected and controlled by unwanted thoughts and feelings that inevitably occur in such difficult circumstances. Patients can learn to stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations that should not prevent them from moving forward in their lives. Counselling approaches and couples therapy can also be used in cases where long covid has put family relationships under strain. Managing Fatigue When we first meet a patient in clinic, we ask them to rate their top 3 most troubling symptoms. The majority include extreme fatigue in that list. Despite resting and a good night’s sleep, fatigue occurs for some long covid patients after very minimal effort. It is prolonged, limits their usual activity and can leave them feeling dull, unmotivated, and dealing with significant “brain fog”. The exhaustion patients experience after physical or mental exertion is termed “post exertional malaise” (PEM) and it is a key symptom of Myalgic Encephalomyelitis (ME)/Chronic Fatigue syndrome. An excellent account of PEM in long covid was provided by Dr. Paul Garner, professor at the Liverpool School of Tropical Medicine who after feeling a little better during his recovery from COVID-19 infection, took part in a high intensity exercise class and immediately relapsed. He didn’t leave his bed for 3 days and many of his symptoms returned. His account perfectly demonstrates the pattern of behaviour that we try to help patients to avoid, called the Boom and Bust cycle. As you can see in the diagram below, some patients wake up and feel great, so do a little more than usual, and then experience a big flare up of fatigue over the next few days. They then do less which leads to a good phase and the cycle repeats and gradually causes the individual to spiral down into less and less function over time.
A recently published study of 3,762 long covid patients found that 89% reported experiencing PEM, with physical activity and stress reported as the most common triggers for energy crashes. The study also found that “pacing” was listed as the most common treatment that patients found helpful.
Pacing involves a patient slowly building up their activity levels whilst monitoring their response to exertion and limiting their activities accordingly to prevent PEM. Patients are required to strike the right balance between activity and rest to ensure less variation in their activity levels over time.
Pacing can be really challenging and frustrating, particularly for patients who were very active before long covid. There are a number of ways that psychology can support patients to pace effectively.
We can encourage patients to keep an activity, rest and symptom diary to record what they have done during the day and how they feel after each activity. We can then review their diaries to help them spot unhelpful patterns of activity such as “boom and bust” behaviours.
We can support patients to use their diaries and their reflections to plan a well-balanced week: prioritising what they need to get done and how they might realistically achieve this, for example by spreading things over a longer number of days and by scheduling regular rest breaks.
Spoon theory is another helpful technique we can draw on to help patients explain and manage their energy levels. Patients are encouraged to imagine they have 12 spoons (energy units) to fuel their day. When they are feeling healthy, cooking a meal might take up 1/12 spoons, but during long covid it might take up more like 4/12. The metaphor can help patients to notice when they need to break up tasks into smaller parts or simplify them, when they need to take rest breaks, and when they might need to ask for help or delegate.
Depression is very common in chronic illness and estimates suggest that it affects over 13% of individuals living with long covid. This should not be surprising, given the effects of ongoing symptoms as well as the disruptions and uncertainty created by illness.
In addition, depression may be part of the illness, with real physical causes. For example, prolonged stress may alter cognition and biochemistry in the body, causing depression.
Individuals with depression can feel sad or empty for much of the time and may become more tearful than usual. They may feel irritable or intolerant of other people and lose interest in activities they used to enjoy. In more severe cases, patients may have thoughts of harming themselves or that they would be better off dead.
There are several psychological interventions that can be used to manage depression in long covid patients.
Firstly, we can provide psychological education materials to help patients to understand the causes of their low mood and to normalise the symptoms they are experiencing. We can also explain how depression feeds on itself, whereby patient’s attitudes become a self-fulfilling prophecy. If patients believe they can get better, they will take actions that have a good chance of helping them.
Cognitive restructuring can also be used to improve low mood. An example might be that a patient has the thought: “I am so tired today. I don’t think I will ever feel energetic again”. A psychologist might encourage the patient to test some alternative thoughts, such as “I am so tired today. However, thinking back to my past experience with fatigue, I know that I will feel good again after giving my body some rest”.
Another example of cognitive reframing could see the thought “My pain is awful and it’s never going to get better” reframed as “Yes, the pain is strong today, but the last time it was this bad, it did get better.”
For individuals experiencing social difficulties related to their depression, techniques from Interpersonal Psychotherapy (IPT) can be used to help. IPT is an evidence-based therapy established on the premise that there is a bidirectional relationship between depression and social difficulties.
Attachment theory provides the theoretical basis for IPT and suggests that people are distressed when they experience disruptions in their relationships. IPT is based on the expectation that by improving interpersonal relationships and social support, depressive symptoms will improve.
The psychologist and patient will gather information about the patient’s key relationships, and they will conceptualise how the patient’s difficulties have developed. Patients will identify problem areas to focus on, such as dispute, grief and loss, or role transitions, and the psychologist will support them to implement specific interpersonal strategies to resolve these difficulties.
More research is needed
Every professional currently working in long covid will tell you that we are learning huge amounts every day and in every consultation. Each patient has a unique experience in regard to the type and the degree of symptoms experienced, as well as the impact of long covid on their mental health and social life.
More research is needed to better understand long covid and to raise awareness of its potential threat.
One area that I find particularly fascinating from a psychological perspective and one in which I would like to uncover more about through research is the role of personality in an individual’s recovery from long covid.
Personality is an individual’s biopsychosocial pattern of reactions and behaviours. It influences the habits we form, the behaviours we engage in, and our appraisals and experiences of stress. Personality itself is also influenced by genetics, experiences in early life, development, and social and cultural relationships across time. Each of these various pathways link to health outcomes.
Anecdotally, a personality trait I have frequently observed in clinic is that of a perfectionist, athletic individual with a strong work ethic. For these individuals, their failure to rise to usually high standards of hard work might lead them to a feeling of lack of agency and low self-esteem.
I believe that focusing on the links between personality and health will aid causal understanding and facilitate the most appropriate tailored psychological interventions for patients.
Help is available
Most people with long covid were not hospitalised and often struggle to access health services, which has been a cause of considerable distress.
If you are struggling with physical, cognitive and/or psychological symptoms after being infected with COVID-19, I strongly recommend you book an appointment with your GP who can consider a referral for you to a specialist long covid clinic in your area. You can also find your local NHS psychological therapies service (IAPT) and self-refer yourself for free talking therapy via this link.
Finally, remember that the current rising rates of COVID-19 will increase the number of individuals living with long covid in the future. It is just as important as ever to stick to the current government guidance and get your vaccine.
Young people might feel invincible from COVID-19, but long covid poses a very serious threat.