Living with Long COVID

Written By Róisín Macleod

Long COVID is described as continued illness as a result of SARS-CoV-2 infection (Alwan, 2021). This umbrella term was first coined by patients who found community on Twitter and encompasses a variety of pathologies (Callard & Perego, 2021). There is not currently one agreed upon definition or criteria for diagnosis, but it is believed to often impact patients who had “mild” symptoms during their initial infection. These patients may not always require hospitalisation and are characterised by recovery lasting longer than 4-12 weeks (NHS, 2021). In May 2021, the Office for National Statistics (ONS) found there were approximately 1 million people in private households within the United Kingdom who continued to experience symptoms after 4 weeks. It was also reported that 376,000 people had been living with Long COVID for at least one year (ONS, 2021). It is expected that these figures are an underestimate of the true number when including care homes, hospitals, prisons and other communal establishments.

 
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Symptoms of Long COVID include, but are not limited to: 

  •  Extreme tiredness (fatigue)

  •  Shortness of breath

  •  Chest pain or tightness and heart palpitations

  • Problems with memory and concentration (“brain fog”)

  • Difficulty sleeping (insomnia)

  • Dizziness/light-headedness

  •  Joint pain and rashes

  •  Depression and anxiety

  • Tinnitus/Earaches

  • Feeling sick, loss of appetite, stomach ache, diarrhoea

  • High temperature, cough, headaches, sore throat, changes to sense of smell or taste

The prevalence of Long COVID is around 1 in 7 people and is most common in working-age adults, but can also occur in other age groups, including children (ONS, 2021). Personally, I have been greatly impacted by Long COVID and was diagnosed with viral-induced asthma which requires daily use of inhalers, viral-induced fatigue and continue to struggle with an increase in migraines, breathlessness, brain fog and chest tightness among other symptoms.

 
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I feel incredibly vulnerable sharing my experience as it has been truly debilitating and impacted all areas of my life. I recognise the importance of sharing how these symptoms and ongoing health concerns have impacted my life as a healthcare professional. During this experience, I have spent a lot of time reflecting on my own clinical practice and manner. I have always felt the importance of advocating for my patients and ensuring patients felt they were believed, supported and worthy of care. I have continued to aim to provide a safe space for my patients and understand from my own experiences even more deeply how important this is. 

 

However, I know this is not the experience of all patients and there are a huge number of patient groups who do not have access to the same level of care. Patients with chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) or other disabilities are often not provided adequate care and may also encounter healthcare professionals not believing their lived experience (WHO, 2020).

As healthcare professionals, it is our duty to provide treatment and advice as appropriate and support our patients in the best way we can in all areas of their care. We need to do better as a collective, particularly for our patients with disabilities who have been disproportionately affected by the pandemic (ONS, 2021). As discussed in the paper by Dr Alwan, we must not repeat the past mistakes of stereotyping our patients and pushing those who are already disadvantaged away from seeking the help they need (Alwan, 2021).

It is important to understand more about the effect on these patient populations as well as those impacted by Long COVID particularly as we start to reduce restrictions and cases of coronavirus continue to rise.

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The pandemic is not over and the World Health Organisation (WHO) reports cases increasing worldwide, particularly in the European Region (WHO, 2021). As the vaccination programme continues to progress we need to understand and take into account the implications of Long COVID and the impact of “living with the virus”. 

 
Róisín Macleod

Róisín is a qualified podiatrist and medical student.

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