The terms endemic, epidemic and pandemic are used to describe the way diseases (not just infections) affect populations of humans or animals. The terms epidemic and pandemic have a very similar meaning: an epidemic is a rise in the number of new cases of a disease in a population; a pandemic is simply an epidemic that occurs over a wide geographical area. The point at which an epidemic becomes a pandemic is the point at which experts start calling it a pandemic. Not all epidemics become pandemics. Some epidemics are limited by geographical boundaries especially in remote rural population who do not travel much, or they just peter out.

When a pandemic or epidemic dies down (they always do) the disease may become endemic. This means that it is always present in the population, usually causing milder disease in most people. This endemic situation is what we experience with seasonal flu, coughs and colds, sore throats, viral gastroenteritis etc. The disease fluctuates and people may notice that ‘there is a lot of it about’ but it never really causes a true epidemic – it just grumbles on year after year.

So why don’t pandemics just go on and on? Humans, like other animals, become immune to the infection. When you have a sore throat you will notice that your ‘glands are up’. If you feel your neck at the corner of your jaw, you will notice a marble-sized hard structure on either side. These are your submandibular lymph nodes (or lymph glands) and they are full of B cells that respond to any foreign material (such as a virus) by producing proteins called antibodies that attach to the intruder and allow the body to get rid of it. When you are fighting an infection the glands become swollen and painful, but the best bit is that the B cells remember the bug and the next time it comes along they are ready to produce a big surge of antibodies to kill it.

This is what being immune is. The antibodies are particular to the bug that provoked them, so being immune to one virus does not mean you are immune to another. Vaccines work by injecting a dead or a live infection that stimulates immunity, but not disease, and so makes the B cells get ready for the real thing. Only twice have vaccines been used to eradicate a disease for ever: smallpox and the cattle plague known as rinderpest. However, for most diseases the bacterium or virus lives in the population, with there being enough immunity in the population (through vaccination or natural infection) for it to be held in check with relatively mild disease in a small number of people. Scientists have borrowed the veterinary term for this state and refer to it as herd immunity.

What does all this mean for Covid-19? The virus is a member of a common family of viruses called coronaviruses. This newly discovered virus is called SARS-cov-2. That seems complicated but it isn’t: ‘SARS’ stands for severe acute respiratory syndrome, ‘cov’ stands for coronavirus, and as this is the second coronavirus to cause a severe acute respiratory syndrome: SARS-cov-2. That is the name of the virus, but the name of the disease it causes is Covid-19 (Coronavirus disease 2019). Why the pandemic? Well, one theory is that SARS-cov-2 was endemic in animals not causing any trouble, but it jumped across to humans and found it could multiply and spread very rapidly in human tissues. As this is a new virus for humans our lymph glands are not prepared and the virus was able to multiply quickly and spread, sometimes without causing disease. So it started as an epidemic in China, and quickly became a pandemic.

As herd immunity grows and especially when we develop a vaccine then Covid-19 will hopefully become endemic in the world population. In this future state, occasional people who are already unwell will become seriously ill but, if it does become endemic in the population, mostly it will be just another thing we notice in winter as we cough in a bus queue and remark that ‘there is a lot of it about’.

With the current pandemic causing uncertainty and confusion around the world, we will continue to keep our followers and supporters updated with any news relevant to people living with pain, their friends, family and healthcare professionals. We will strive to do our best to supply all our resources (magazines, leaflets, podcasts) while we can, assuming it is safe for our staff and volunteers to do so.

Unfortunately, we have had to make the difficult decision to suspend our telephone Helpline support for the immediate future. The Helpline is staffed by volunteers, some of whom have their own health issues. Given the current situation, we are not able to provide the Helpline service in the way that we would wish to.

People seeking support with their pain may continue to use our online community Health Unlocked Forum at healthunlocked.com/painconcern or contact our email help service at help@painconcern.org.uk.

We will strive to reinstate the service as soon as it is safe and viable to do so. But for now, stay safe, stay home, wash your hands and we will still be here on the other side, providing resources, support and advocating for those living with pain.

*** COVID-19 UPDATE ***

We at Pain Concern have made the difficult decision to suspend our Helpline support for the immediate future. The Helpline is staffed by volunteers, some of whom have their own health issues. Given the current situation, we are not able to provide the Helpline service in the way that we would wish to.

People seeking support with their pain may continue to use our online community Health Unlocked Forum at healthunlocked.com/painconcern or contact our email help service at help@painconcern.org.uk.

We will strive to reinstate the service as soon as it is safe and viable to do so.

Please Read This Leaflet Carefully

by Karen Havelin

Dead Ink Books, 320pp, £11.99

ISBN: 978-1911585541

Published May 2019

Review by Sarah Edwards

This novel is written from the perspective of Laura, a young woman with endometriosis. It tracks her life backwards from 2016, as a working mother in New York, all the way to 1995, when she was a teenage figure skater living in Norway. We read about Laura developing her identity, trying to fulfill her career and travel ambitions, starting (and ending) romantic relationships, and struggling with the demands of parenthood. The reverse chronology lets us appreciate how much she achieves and how far she has come, layering more insight into her personal history and background as it progresses.

Throughout this narrative of Laura’s life, the pervading thread is her struggle with endometriosis and its impact on her. Descriptions of pain and discomfort, which change over different stages of her life, are constantly interwoven. We read about the sometimes helpful, sometimes confusing, sometimes distressing medical appointments which she endures, and the additional therapies and strategies, which she tries to implement consistently, to help her to manage a ‘normal’ life. We also experience the emotional turmoil that this struggle takes her through. This ranges from from the relief and hope of a diagnosis, to the fear of the pain getting worse, to the distress of an interaction with an unsympathetic healthcare professional, and the anger that she has no choice but to live with this long-term health condition.

The story of Laura opens a window onto the challenges of trying to live a full life whilst also living with the symptoms of endometriosis. It shows us the emotional, physical and cognitive impact of having a long-term pain condition, normalising how much this struggle is present in daily life. We see clearly the struggle which Laura faces in trying to do the ‘average’ things in life, such as having a long-term relationship and working full-time, and how much of a balancing act she has daily to ensure that the pain does not flare to unmanageable levels. We also see the impact that it has on her relationships, whether family, romantic or friends.

At times, the strong descriptions of the all-consuming and debilitating nature of Laura’s pain can make for difficult reading. In its use of frequency to ensure that these descriptions are made clear (and that Laura is listened to), the book can feel a little repetitive. However, this also helps us to understand how inescapable and ever-present the pain is. We are left admiring her strength, determination and emotional resilience. This is a novel which gives real insight into the impact which a long-term pain condition has on all aspects of ‘normal’ life.

Sarah Edwards is a Clinical Psychologist at the University College London Hospitals’ Pain Management Centre, where she helps to deliver self-management support to people with abdomino-pelvic pain. She was also a co-author of Pain Concern’s Sex and Chronic Pain leaflet.