Dark sunken eyes, multiple bruises, thin hair or bald patches, random rashes that come and go, and perhaps a central line catheter protruding from the skin. Sounds like a great Halloween costume? It’s also what a lot of people with chronic illness look like all year round.
Ghosts and zombies are all good fun, but the most terrifying thing imaginable is that millions of people are living with chronic, debilitating illness that has no known cause and no effective treatment.
They (the mysterious ‘they’!) estimate that 1.2 to 2.8 million people in the UK alone live with fibromyalgia, 250,000 with ME/CFS, 100,000 with MS, and there are many different auto immune conditions like lupus and hashimoto’s thyroiditis. British Lyme disease infection rates are controversial, official numbers are 3,000 new infections per year, if we times it by 10 like the CDC did last year in the USA then it could be 30,000, but according to some basic maths applied to a set of German statistics, I worked out this number could actually be closer to 1 million new cases per year** Of those a large proportion will have inadequate or no early treatment and go on to join the ranks of the chronically ill.
7.8 million people are living with chronic pain in the UK, and 45% of them don’t have access to adequate management for their pain. Chronic pain is responsible for 4.6 million GP appointments each year in the UK, costing taxpayers £69 million. (WebMD)
People lose their jobs, their homes, their hobbies and sometimes even their friends and family who simply do not understand or cannot adapt to life with a chronically ill person. Your life can revolve around hospital visits, drugs, tests and yes, pain and suffering.
Starting to sound like a horror movie? Perhaps. But the people behind the numbers are some of the most amazing people I know. They’ve not only dealt with the shitty end of life’s stick, but they’ve actively helped others in similar situations, they’ve campaigned, protested, and spread awareness. They’re more empathetic, kind and generous and although we’d happily all wave a witch’s wand and make chronic illness disappear, it would be a shame to lose the positive impacts it has.
There are upsides to living the life of the living dead –
- You can legitimately scoff at people dressing up like zombies. You perfected the look a long time ago.
- When annoying trick or treaters come to the door, show them your PICC/port line that gives direct venous access, that should give them something to scream about!
- Forget Halloween sweets and candy. You’ve got a bucket load of pretty medication and supplements.
- You have plenty of horror stories to tell of various hospital visits, bodily fluids pouring out where they’re not meant to be, hallucinations, or tales of woe involving the perils of sugar induced fungal overgrowth. Shexy!
Sorry, but the chronically ill WIN at Halloween. End of. And if you’re too sick to go to a Halloween party, you could always dress up your cat!
According to the Gaelic festival of Samhain, which is where Halloween originates, this time of the year is about celebrating the lives of those we’ve lost and preparing for the coming dark winter. Winter is a time for hibernation, reflection and healing and us chronically ill folk could certainly use some healing!
So happy Halloween / Samhain, and remember to shake your meds at passers by!
** In Germany there were 753,000 bullseye rashes in 2008. (diagnostic of Lyme disease.) They say that only half of people infected get the rash, so let's say there are 1,500,000 people newly infected in Germany per year. (1.5 million.) Germany has a population of 82.1 million So 1.83% of their population gets infected every year. The UK has a population of 62.4 million (2011 census) So 1.83% of our population is 1.14 million So based on the assumptions that they're A) diagnosing bulls-eyes correctly in Germany, B) bulls eyes occur in roughly 50% of cases, and C) we have a similar number of ticks and infection - which is the big question mark admittedly, but it might even out, their higher infection/tick rates with our lack of tick awareness, tick checks and using repellent. As a rough guesstimate, the UK could be getting 1.14 million newly infected people per year.