PUBLISHED 07/05/22 BY EILEEN DAVIDSON
From spoonie to painsomina to brain fog, find out common terms used by those living with arthritis and chronic illness.
Those living with arthritis tend to speak another language that is mostly only known between others living with a chronic illness like arthritis. Painsomnia? Spoonie? Invisible illness?
It took a bit for me to understand some of them; some I got right away. Knowing these terms can help you spot someone else in your community with something in common. Knowing these words can also help you connect to a community of people going through the same struggles that come with living with arthritis and chronic illness. And connecting with those who share that similarity can be a great resource to patients.
Here are some common terms (and their definitions) that you can find in the arthritis community. Type these words into social media to find groups or posts from others going through similar experiences as you.
I am opening this one up by mentioning that the word arthritis isn’t one specific condition (most think of osteoarthritis) but over 200 and include musculoskeletal conditions like fibromyalgia or chronic fatigue syndrome.
Spoonie or Spoon Theory
The most common nickname for those living with a chronic illness that comes with debilitating fatigue is spoonie. The term was coined by Christine Miserandino, a lupus patient, to describe how everyday tasks take away from the limited energy we have each day. Healthy people tend to have unlimited spoons in a day whereas someone with a chronic illness will have minimal spoons, often experiencing an increase in fatigue with everything we do like a shower or preparing a meal.
On social media you can find many hashtags, groups, and communities with spoons or spoonie in the name.
Ok, so fatigue isn’t exactly a word limited to the chronic illness community but I am adding it to the list because there is a definite difference between feeling fatigued from a chronic illness compared to the tiredness healthy people experience. For people with chronic illness, no matter how long you rest, the unrelenting tiredness (or as we call it fatigue) never ends. It’s easier to trigger fatigue at any hour in the day, even a simple shower can trigger it. Chronic fatigue makes all aspects of our lives difficult, sometimes even more so than the chronic pain from arthritis.
But You Don’t Look Sick…
The curse of living with an invisible illness. These are pretty self explanatory but incredibly common with those living with arthritis or other chronic illnesses. You don’t need a walker, cane, or wheelchair to be sick. You don’t need to lose all your hair to chemo to be sick and in need of life-changing medications. Why we have to look sick to be believed about our illnesses is definitely one of the biggest frustrations living with an invisible illness.
But You’re Too Young for That
Just about anyone who was diagnosed with a form of arthritis before retirement age has heard they are too young to have that. Unfortunately arthritis has a stigma stuck to it that it is only a joint problem for the elderly. The weirdest time someone says it to us is when it’s a health care provider, which unfortunately, happens often. The truth is arthritis doesn’t care about age and can be diagnosed at infancy.
Known as cognitive dysfunction or cog fog, it is a common symptom for those living with chronic illness. It presents itself by us being forgetful, slurring our words, mixing up words, or having a hard time understanding what someone is saying to us. Causes can be over exertion, weather changes, flares, mental health issues, cannabis, or medications. Brain fog is especially heightened when fatigue is dominant.
This describes how we feel not after a fun night out but after we take our medications and their side effects are at the strongest. Often our medications can leave us feeling like we have a hangover or the flu but we didn’t drink anything. Methotrexate hangover is another very common term in the arthritis world.
Chronic illnesses are like chips; you often can’t have just one. Comorbidities, also known as multimorbidity or comorbid conditions, are tag along conditions that can either come before or after an arthritis diagnosis. Commonly those with arthritis may have more than one variety of arthritis. For example, I live with RA, osteoarthritis, and fibromyalgia, along with anxiety, depression, and endometriosis. Mental health struggles are common with those who have arthritis. Comorbidities are crucial to understanding how to manage a chronic illness like arthritis because they often include organ involvement like lung and heart disease. Arthritis often comes first.
This one is pretty simple, it’s pain + insomnia caused by said pain. However this can also be caused by our medications and other health conditions like anxiety; not limiting it to just pain. Painsomnia is a pathway to heightened disease activity as not getting proper sleep is shown to really trigger symptoms in inflammatory arthritis.
Warrior or Fighter
We might be fighting in our pajamas mostly but the battle we are fighting within our body is definitely no joke, especially without a cure for our illnesses. This is especially true for those with an autoimmune form of arthritis — like rheumatoid arthritis, lupus, psoriatic arthritis, or ankylosing spondylitis — in which our healthy cells are attacking themselves making us ill. The term warrior or fighter is however not limited to autoimmune arthritis; it can hold significant meaning for many other physical and mental health conditions.
I live with rheumatoid arthritis, if you do too then we are rheum mates. Although not just limited to rheumatoid arthritis, those with other rheumatic diseases can be rheum mates, too.
Albeism describes “disability discrimination” or “disability prejudice” and it’s not spoken of enough. However, those living with a debilitating chronic condition know it all too well and are subjected to it on the regular.
Some examples of ableism include using a disabled-only parking space or seats on a bus or train when you don’t need them; thinking a disability is only real if visible; and belief that those with typical abilities are superior. However that’s only a glimpse into common ableist actions.