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.
