You would have to be living under a rock to not have heard of COVID-19 and the Coronavirus pandemic, so I’m not going to introduce this article with as much detail as I normally would. I live in the UK and we are currently in as close to a ‘lock down’ as possible, without the government actually calling it that.

The government have sent out letters to one and a half million people in England, informing them that they are in the most high risk category and that they should stay in their houses for the next 3 months. These people include those who are currently undergoing chemotherapy, the recipients of organ transplants and people with severe respiratory diseases. Work places have screened employees to send home their most vulnerable staff, to work on laptops, or home computers, including those who are pregnant and have underlying medical conditions. Online supermarkets will only deliver to those identified as being ‘vulnerable’.

But what happens to those who know there is something wrong, but aren’t yet diagnosed?

I myself have been diagnosed with two rare diseases – trigeminal neuralgia (TN) and an eye disease (diagnosed as AZOOR and then changed to white dot syndrome in 2022). I’m currently having ongoing medical investigations for polycystic ovaries and to find an underlying medical condition for my TN and eye disease. I have no official diagnosis for any other medical condition, but my medical records are stuffed full to the brim with details of my problems – my fatigue, my memory loss, my muscle weakness and results from different scans, examinations and tests. I was recently told that I probably don’t have multiple sclerosis (MS), but that my eye disease could be a sign I have some kind of autoimmune disease. I am also under investigations for a neuromuscular disorder. I am just waiting for my medical condition to have a name.

I personally haven’t been advised I need to stay home and I am a key worker, who will definitely be in a hospital until the last possible minute. However, I may be more vulnerable to a virus than other people I work with, but because I haven’t had an official diagnosis of anything else, the NHS and government won’t identify me and I won’t be asked to stay home. I don’t feel more at risk, but I may well be and I may well have been told to stay home if this had all happened 12 months down the line.

This got me thinking about other people being undiagnosed during the coronavirus pandemic.

You could be one routine test away from an official diagnosis of an autoimmune condition. You could be highly suspected of having MS. You could be currently under the care of a neurologist, who thinks you may have a rare condition that is hard to diagnose, but you have already been told that is what they are 99.9% sure you have. You could be suspected of having some kind of organ failure. You could have a long list of very unusual symptoms that no one has put together yet. You could have a mis-diagnosed medical condition. You could be fighting with the NHS to get a diagnosis.

Here are some pretty scary facts about getting a medical diagnosis:

• Kidney disease has very few early symptoms in the first two stages.
• Most people start to show MS symptoms 5 years before they are able to get a diagnosis.
• Lyme disease can cause over 300 different symptoms, which makes diagnosis really difficult for health professionals.
• The average time it takes to be diagnosed with Lupus is 7 years.
• At least 10% of all cancer cases are misdiagnosed.
• Women with heart disease are most likely to be misdiagnosed, due to gastrointestinal symptoms being ignored.

*facts from different medical journals and webpages

Getting a diagnosis is in no way indicative of how unwell someone is. I think the UK government has done a wonderful thing in working with the NHS and reaching out to those diagnosed with specific medical conditions. However, I’m sure a terrifying amount of people have been missed and are still walking around the supermarkets, are in work, travelling on public transport, or are caring for other vulnerable people.

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Trigeminal Neuralgia