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  • Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’

    • UK
    • Interviews and reflections
    • New
    • Everyone

    Summary

    A significant number of people, who may or may not have been acutely unwell with COVID-19, are experiencing a prolonged and debilitating recovery at home. Symptoms and experiences of care seem to vary greatly among this group, sometimes known as the COVID-19 ‘long-haulers’. Many are finding comfort and reassurance through online communities, set up by and designed for patients who are struggling to get back on their feet.

    About the Author

    In this interview Patient Safety Learning speaks to Barbara Melville, a patient and member of a Facebook group called Covid-19 Support Group #covid1in20. Barbara speaks of her personal experience of safe and unsafe care and highlights the dangers of ‘catch-all’ diagnoses. 

    Questions & Answers

    You’ve mentioned that you and other members of the Covid-19 Support group on Facebook are experiencing symptoms that are continuing for weeks. What is your personal experience?

    My symptoms began in mid-March. The first fortnight was benign I had the mildest of coughs, flushes and sniffles. Then came the chest pain and breathing difficulties. At the beginning of April, I was so ill I couldn’t walk. Now I can manage a bit more, but I’m still bed bound and struggling to breathe. Sitting up is tiring and taking even a few steps leaves me even more breathless and tachycardic. And it doesn’t end there – ice-cold hands and feet, white nails, tinnitus, dizziness, post-nasal drip, stomach acid… I could go on!  

    How do you feel now? What is your biggest concern?

    I feel like my body is haunted. A couple of weeks in, I had shortness of breath at rest, but it passed. It returned about a week ago. It’s especially bad at night, rather like asthma… but the inhaler doesn’t help. I lie there feeling like every breath is laboured. Sometimes I end up staying up all night. But that’s not the worst part – the worst part is that I’ve had to fight so hard to get the referrals I need. Fortunately, I’ve now got a good cardiologist and will soon be starting physiotherapy. 

    People are sharing their experiences of these long-lasting symptoms and the mixed responses they are getting when they seek advice and treatment. What is your experience of this? What are others’ experiences that you are aware of?

    My care has been some of the best and worst I’ve ever experienced.

    I had a brief assessment at the end of March but despite having blue nails and grey lips, I didn’t qualify for admission. On 1 April, I got worse. The shortness of breath began happening at rest. Breathing felt exhausting and my heartbeat was all over the place. As I tried to sleep, I felt a crushing sensation and pain across my whole chest. I could barely talk to 111 – I had to keep taking breaths mid-sentence. They asked if I suffered from anxiety. I protested that it WASN’T anxiety – I couldn’t breathe or get to the bathroom! They advised rest and fluids.

    I felt bereft after that call. I pulled my legs round to the side of the bed, stood up, slowly and took a step towards the bathroom. I collapsed immediately. I lay on the floor for three hours waiting for an ambulance. At one point I had to crawl to the bathroom and my partner had to lift me on to the toilet and hold me steady, as I kept falling forward.  One paramedic was helpful and kind, but the other was disbelieving, rolling her eyes when I said I couldn’t walk.

    Once I was in hospital, I was treated so well. The staff were so upbeat, efficient and kind. I wasn’t in for long but they took time to explain what they knew about the disease and what was happening in my body. And despite that one difficult call, 111 were otherwise stellar, as were the COVID Hub doctors.

    But my medical centre has been awful. My GP called my white nails ‘a bit pale’ and said they needed a good cut. He ignored me when I explained white nails can indicate systemic disease. I got an appointment with a cardiologist by asking a private GP to call one. The cardiologist consulted with me later that day and agreed it was appropriate to take my treatment forward on the NHS.

    What would you like to see done differently to help people who are experiencing a slow recovery from COVID-19?

    We need to be part of the narrative. We need to be monitored, treated and researched. We need to drop the word ‘mild’. We can’t keep slipping down the cracks.

    And the gaslighting labels needs to stop. Labelling someone as ‘anxious’, without thoroughly exploring clinical symptoms, is as dangerous as it is abusive. Symptoms like kidney pain, low blood oxygen, black fingers… these symptoms do not, and never will, sit under the umbrella of anxiety – and yet this is what people in the support groups are being told.

    This is a new, complex and multi-system disease. Long-term sufferers are now coming forward with stories of heart and lung damage, including some acutely serious conditions not detected with ECGs, chest X-rays or bloods. Bottom line – if basic tests are clear and the person is still suffering with severe symptoms – you don’t slam the door. You open it more.

    Some people will have post-viral fatigue (PVF) and so it’s great to raise awareness about this condition. But I worry about such labels being used as a catch-all. Like with anxiety, PVF should only be diagnosed where the symptoms match and where all physical explanations have been exhausted through thorough investigations. And then, once a diagnosis is made, the patient needs support, not silence.  

    While the individual GPs do need to take responsibility for their unconscious biases, it is also on the government to ensure NHS staff are properly supported – that includes ensuring GPs have good guidelines, extensive support for their wellbeing and training in the bias surrounding chronic illness. That is how you protect the NHS.

    Do you feel your wellbeing and mental health has been impacted by your experience?

    The uncertainty is difficult and I’ve felt down at times but this has made me more resilient than I ever thought I could be. I have my meltdowns, but I do believe I’ll get better, especially now I have a cardiologist.

    The worst part is the medical gaslighting. It is traumatising to be dismissed with dreadful catch-all diagnoses that do not explain my symptoms.

    On the plus side, I’ve really learned to listen to my body, and to soothe myself. I have a great support network too, so while I might have some post-traumatic stress ahead of me, I’m confident I’ll get through it, somehow

     

    Have you experienced prolonged symptoms of COVID-19 like Barbara? Join the conversation in our community forum here

    Further links:

    Patient recovery resources

    'False negative' and the impact on my mental health

    COVID-19 tests: The safety implications of false negatives
     

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