How can psychology help us to treat long covid? (Part one of two)
At the beginning of the COVID-19 pandemic, I co-published a blog about how behavioural science could help us to understand and change human behaviour during a pandemic. Published in April last year, the blog focused optimistically on the different strategies the government could utilise to help slow the spread of coronavirus and prevent large proportions of the population becoming infected.
More than a year has passed and sadly the situation is bleak. At the time of writing, the COVID-19 pandemic has caused over 185 million infections and over 4 million deaths worldwide. The UK is one of the worst affected countries, with over 5 million confirmed cases and over 128,000 deaths in total.
But as the lifting of most covid guidance and legal restrictions in England occurred on the 19th July and most people’s lives return to some kind of normal, the NHS has been left to manage a hugely worrying knock-on effect of the pandemic, that of long covid.
I am currently working in a long covid clinic in South East London and I wanted to use this two-part blog piece to share some of my experience in this new and challenging field. Specifically, I want to focus on the key psychological themes that have emerged in my consultations and how psychological interventions have the potential to help.
The long covid experience
Imagine this — you were hit with COVID-19 earlier this year and you become acutely ill for about three weeks. Each morning you wake up scared that you might not make it through the day. You contemplate writing letters to your kids in case you don’t make it through.
You spend virtually every moment lying on the sofa falling in and out of sleep, totally disorientated, only getting up to use the toilet.
Then you start to turn a corner. Each day the fever, cough and breathlessness get slightly easier to manage. You’re over the worst of this terrible disease and you think to yourself “give it a week or two, and I’ll be back to my usual self”.
But weeks pass and whilst the worst of the symptoms have gradually disappeared, you are still not feeling like you.
You’re struggling to function at work. On some days you can’t even read a whole email from beginning to end. You’re finding it hard to meet your responsibilities at home because you have virtually zero energy. Even small daily tasks like showering or cleaning the kitchen leave you utterly exhausted. You feel like you’re letting everyone down.
Your body is in pain. You can’t concentrate on anything, not even watching the television. You keep forgetting simple everyday words that seem to be on the tip of your tongue but you just can’t reach them. You struggle to help your kids with their maths homework because you can’t compute the most basic of calculations.
Your head feels like there is a marshmallow stuck between your ears and your brain feels like it’s in a fog. It feels like it’s not working the way it used to.
You feel like a totally different person.
Your GP discharges you because you don’t have the infection anymore. You should be feeling fine, but you’re not. Everyone around you seems to have bounced back from their infections without much difficulty. But you haven’t.
This is long covid and it needs more attention.
What is long covid?
According to new NICE guidance, long covid or “Post-COVID-19 syndrome” occurs when physical, cognitive and/or psychological “signs and symptoms that develop during or following an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis”.
Data from the ONS shows that at the beginning of May 2021, an estimated 1 million people in the UK (1.6% of the total population) were experiencing long covid, with nearly two-thirds experiencing a negative impact on their day-to-day activities. The most common symptoms reported include extreme tiredness, shortness of breath, muscle aches and difficulty concentrating.
From the same report, self-reported long covid has been found to be most common in the UK in people aged 35 to 69 years, in women, in those living in the most deprived areas, and in those living with an existing disability or health condition. Health and social care workers also have a higher prevalence of long covid than those working in other sectors.
It is estimated that 10% of people managing their COVID-19 infection will experience persistent symptoms beyond one month. That is a scarily large statistic to process as we appear to be entering a third wave, with cases rising across many parts of the UK.
Long covid looks set to affect thousands more individuals and to have a profound effect on our economy and healthcare system.
A multidisciplinary approach to treatment
Long covid is a complex disease that affects the whole body and is difficult to treat. It involves a range of physical, cognitive and psychological symptoms with occupational, economic, and social implications.
A holistic, person centred, multidisciplinary approach is crucial for patients to have the best chance of improvement and recovery.
Thankfully this is starting to take shape. In December last year, NHS England announced £10 million of funding to set up a network of more than 60 long covid clinics around the country. These clinics bring together the expertise and skills of doctors, nurses, physiotherapists, psychologists and occupational therapists to jointly plan and manage care.
In a recent Guardian article, Professor Carmine Pariante, Editor in Chief of InSPIre the Mind, emphasised the important role that psychological interventions can play in improving the physical health and mental wellbeing of individuals living with long term physical health conditions.
In his article, he cites the well-known placebo effect to illustrate how our expectations and the beliefs we hold about ourselves and the world around us can have a powerful effect on our health and recovery from illness; effects which have been measured objectively by changes in the brain and the body.
So how can psychology help treat long covid?
Psychologists can help patients with long covid in a number of ways. In the remainder of this blog I will touch on the important role of validating patient’s experiences, as well as different techniques that can be used to manage fear and worry.
On Thursday, part two will be published which will detail how psychologists can support patients with long covid to manage loss and transition, fatigue and depression.
Validating experiences
As Carmine mentions in his Guardian article, many patients with long covid are being dismissed by health professionals who think that because they cannot detect long covid physically in the bodies of their patients, that their symptoms must be “in their minds” and hence “not real”.
Indeed many patients who I have met in clinic are fed up of not being believed. They are fed up of medical professionals attributing their experience to anxiety and they are desperate to be taken seriously.
Simply because an individual’s original cause of the symptoms are now undetectable in the body does not mean they are not real. This narrative is extremely unhelpful and it has a damaging effect on patients and their help seeking behaviour.
Therefore the first “intervention” that our whole multidisciplinary team can provide is to be non-judgemental and to validate each patient’s experience.
We do this by allowing patients to tell us their story from beginning to end. We give them the time and space to talk and to express their concerns, and we let them know they are being listened to and believed.
Managing Fear and Worry
It is common for patients with long covid to experience fear. Some are scared of dying from long covid, others worry that they will never fully recover, and some are terrified of catching COVID-19 for a second time.
Suffering from an unexplained illness is incredibly distressing. Fear, anxiety and worry are normal and understandable reactions to suddenly having your life turned upside down.
Anxiety occurs because illness poses a threat to the patient. It threatens their physical health as well as their autonomy and independence. These threats can alter patient’s beliefs about themselves and their world. Patients might start to believe that they are vulnerable, that the world isn’t safe and that they are not good enough.
A combination of increased vulnerability and a decreased sense of power can lead to patients feeling that they have lost control over their bodies and their ability to plan and predict, which often creates frustration and feeds a sense of helplessness.
Patients will process this with emotions and the strength of these emotions can create a vicious cycle. Emotions can intensify the physical symptoms of long covid, which in turn can increase feelings of anxiety.
In clinic, there are a number of interventions we can provide to help patients manage their anxiety. Firstly, we can provide psychological education to help patients to understand the causes of their anxiety and to normalise the symptoms they are experiencing.
We can recommend stress reduction techniques which help to reduce the intensity of a patient’s emotional reactions and, by doing so, reduce the maintaining cycle in which emotions and symptoms intensify one another. Examples include breathing techniques that calm the body through effects on the respiratory, cardiovascular, cardiorespiratory and autonomic nervous systems, as well as attention refocusing exercises such mindfulness that help to keep the patient’s minds in the present moment and reduce worry.
We can also support patients to problem solve more effectively and to plan an information diet that includes trusted and uplifting new sources, since the media is fully aware that our brains are built to fixate on threat.
Cognitive restructuring can also be drawn upon to help patients discover, challenge and modify their negative or irrational thoughts and beliefs. It is a staple technique of Cognitive Behavioural Therapy (CBT) and aims to help individuals to reduce their anxiety through noticing and changing their negative thinking patterns and cultivating more positive and functional thought habits.
Thank you for reading and I hope you learnt something new about the experience of people living with long covid.
Please stay tuned on Thursday for part two of this blog which will detail how psychologists can support patients with long covid to manage loss and transition, fatigue and depression!
Header Image Source: Marta Zubieta on The Bristol Cable