Image: Erin Pullen
As I research deeper into Long Covid and its potential management I am finding chronic illness has its own language.
If you’ve recently been diagnosed or suspect you have a chronic disease, you’ve may have already come across terms you don’t understand.
For chronic illness sufferers these terms communicate the most common obstacles and triumphs of living with an invisible /unvalidated illness.
I thought I would share with you what I have found and I would be happy for any comments on further terms you maybe aware of.
As medical students we are constantly tested on ward rounds to list a 100 causes of say - breathlessness. The average student would trot out a few key lung and heart conditions but only the brightest would know the really rare ones and would get gushing praise from the consultant (think Hermione Granger). However this praise on one hand is rapidly obliterated by the overriding teaching mantra of
"when you hear hoofbeats behind you, don't expect a zebra"
In other words we are asked to look for the more common and usual diagnosis. The other rarer diseases are forgotten in pursuit of this. An average medical student may never have remembered these rarer ones anyway as there is always so much to learn.
The Ehlers-Danlos Society use a zebra as their logo the very reason that
"sometimes when you hear hoofbeats, it really is a zebra"
Those with Long Covid are constantly coming up against the brick wall of "well all your tests are normal and I can find, on the basis of these, nothing wrong" despite us KNOWING that there is something very, very wrong.
Those with rare illnesses suffer - "you can't possibly have that it's too rare" - i.e I've never seen it
Those who look normal on the outside - "but you look too well to be actually ill"
Those who are very young or old - "you're too young to have so many problems"
"you're too old to have that"
Those with Long Covid - "no one knows what it is yet and until they do I can't help you further"
Many of us have had outright denial that we are unwell, that in some way we are fabricating our illness (which would have to be a collective hallucination of 100's of thousand's of sufferers) or it is "all in our minds" - probably the most damaging thing any one could say.
And it doesn't just come from those in the medical profession, it can be nurses, health care assistants, family and friends. Because we can look healthy on the outside, one of the greatest challenges we have is explaining to others how a person who looks so good can actually feel sick or be in pain.
Those with severe rare illnesses refer to themselves as unicorns
A spoonie refers to any individual who suffers from a chronic illness. These illnesses are often invisible. To most people, spoonies may appear healthy and able-bodied, especially when they are young.
The term was coined by Christine Miserandino, an award-winning blogger and patient advocate, when she was trying to explain to a friend what it’s like to live with lupus.
“I thought she already knew the medical definition of Lupus,” Miserandino recalls at her website, But You Don’t Look Sick. “Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. How do I answer a question I never was able to answer for myself?”
So, Christine laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. Hence the term Spoonie.
A POTSie is someone who suffers from Dysautonomia - namely Positional Orthostatic Tachycardia Syndrome. This is a chronic, invisible illness where the things your body does automatically function incorrectly. Like how fast your heart beats, your blood pressure, your body temperature and many other things. It have numerous symptoms and can be managed but not cured. I developed this as a result of the acute Covid-19 infection as do I think have many many others.
So these are some chronic illness terminology that I discovered and educated myself on. Please let share with me any others that YOU know. The Reluctant Spoonie referred to herself as A Chronic Illness Warrior which I for one think is very apt.