Why mental health matters in Long Covid: A lived-experience perspective

Understanding and addressing mental health is essential for supporting people with Long Covid, yet it is often overlooked or misunderstood.

I’m a social researcher with experience of Long Covid, and in this blog I summarise what my qualitative research into recovery from Long Covid tells us about Long Covid and mental health.

Long Covid and mental health

Research shows that Long Covid negatively affects mental health in two ways: through physiological changes in the body, and through the psychological toll of living with a highly stigmatised chronic illness.

And, in turn, depression and anxiety can affect us physiologically. Chronic stress can drive sympathetic overactivity (keeping us trapped in ‘fight or flight’), disrupt immune function through inflammation and immune suppression, and is associated with slower recovery from illness.

Psychologisation of symptoms – and its impact on mental health

It is not uncommon for Long Covid to be misdiagnosed as a mental health issue – for physical symptoms to be psychologised.  

A young woman in my Long Covid support group described coming round from a seizure in hospital, and hearing a nurse asking ‘is she faking it?’. Someone else told me that her GP ‘does not believe in Long Covid’. Another ended their Cognitive Behavioural Therapy after two sessions because their therapist was treating their condition as solely psychological. Where symptoms cannot be medically explained, disbelief and dismissal by healthcare staff are all too common:

‘Initially the doctors were like, “you're a woman, you can be quite anxious.” And I said, “I'm not anxious, I'm unwell. You're not taking me seriously”. [Mental health service] said “we think you've got an eating disorder”. And I said, “I don't have an eating disorder, I cannot physically eat because I'm ill”.

So that probably made me more depressed because when I was reaching out to services, the understanding wasn't there. I think that kept me ill a little longer than I needed to be.’ – interviewee with Long Covid

Those of us experiencing these reactions, often from healthcare professionals, but also from colleagues, friends and family, not only have to deal with the impact of poor health. We also have to spend scarce physical, cognitive and emotional energy just to be believed and access support.

Depression and anxiety

Many of the people I interviewed experienced a severe decline in their mental health when they found themselves unable to recover, unsupported, and without hope that recovery was possible. Depression was common. People experienced overwhelming loss, grief and loss of hope. And the tools that people previously used to manage their well-being – like seeing friends, hobbies and exercise – became inaccessible.

I was shocked by how many people talked about feeling suicidal as a result of their condition. When you can no longer work, exercise, spend time with friends and family – no longer do the things that bring you joy, connection and a sense of identity and purpose – and when you see no way out – then you can start to question what you are living for.

‘I thought I was stuck in [this] dark pit. I honestly thought I don’t want to live anymore. Long Covid was the worst thing that ever happened to me.’

‘I did have suicidal thoughts. I had such bad anxiety, I honestly thought I was going to die, like literally. Literally laid in bed, I thought this is it, I'm done, I'm not going to get better. And if this is my life now, I don't want to be here.’

Long Covid, trauma and loss

Trauma interacts with Long Covid in multiple ways. I believe that all of us with Long Covid have experienced the trauma of suddenly developing a chronic illness that so dramatically upends our lives, undermines our sense of security in our health, and turns our sense of who we are upside down. We all need to go through a painful grieving process, to let go, reimagine and rebuild our lives.

Some people experienced trauma during their acute Covid-19 infections, being hospitalised and even facing death. Support with processing this trauma and loss can be vital to people’s recoveries. 

Others experienced the re-emergence of past or childhood trauma as we recovered from Long Covid. Old coping strategies – pushing through, detaching from our bodies, not knowing how to listen to our needs or set boundaries – made our Long Covid worse. We needed psychological support to heal from old wounds and create more healthy patterns.

Health inequalities

The psychologisation of Long Covid symptoms is the latest in a longstanding pattern of the psychologisation of other health conditions that are predominantly experienced by women, from ME/CFS, autoimmune conditions such as fibromyalgia, chronic pain such as endometriosis, menopause and perimenopause, to the historical diagnosis of hysteria.

Current UK Government messaging around welfare benefits for people with long-term health conditions risks reinforcing harmful narratives rooted in the psychologisation of symptoms - narratives that people are exaggerating, not trying hard enough, or less deserving of support. Such narratives add to stigma and undermine access to care. People with chronic illness deserve dignity and support, regardless of their ability to work.

Likewise, there is a history of physical symptoms being psychologised for people in minoritised ethnic groups. However, people in these groups face additional systemic barriers. Many of the white British people I interviewed said that finding their way to specialist Long Covid support was a turning point: it offered validation, hope and a sense of no longer being alone, which helped them move on from the darkest times mentally. However, specialist support was not reaching people from minoritised ethnic groups. They were being left to deal with the physiological and psychological effects of Long Covid alone. This is a structural inequity that compounds existing disadvantage, and a critical gap in care provision.

The need for specialist psychological support

In Calderdale, the Long Covid Clinic team included a psychologist delivering Compassion Focused Therapy. Those who received this support found it incredibly valuable. However, many never reached the top of the waiting list – short-term funding for the clinic meant that, when the post became vacant, it couldn’t be filled again. More accessible generic therapies such as CBT are often insufficient for the complex psychological needs associated with Long Covid.

Many people remain on waiting lists or without any access to specialist support, despite the profound mental health impacts they are experiencing.

What we need

• Specialist psychological support within multi-disciplinary teams. Support to process trauma and loss, manage anxiety, and develop new psychological strategies for health, can help us move forward in recovery.

• An end to psychologisation. Healthcare professionals and policymakers must listen to and believe lived experiences.

• Hope and validation. Having someone there to listen, validate our experiences and guide us can be a turning point in recovery.

• Address structural inequities and health disparities. Long Covid services must be accessible, culturally competent, and proactively reach minoritised ethnic communities. Policymakers and providers have a responsibility to ensure these groups are not left behind, so existing disadvantages are not compounded.

Long Covid has a physiological basis, but it is not just a physical illness. If we want to support people to recover from Long Covid, then we need to understand the mental health impacts of the condition.

Specialist psychological care is not optional - it is integral to supporting recovery, promoting well-being, and enabling people to live well with this complex condition.