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.
Many people with inflammatory arthritis receive medications through self injection or an IV infusion. I refer to this as my joint juice because without it my joints would get very angry and creaky.
Spondy describes those living with a category of arthritis diseases called spondyloarthritis, a family of inflammatory rheumatic diseases that have some key features in common, including inflammation, pain, and stiffness in the spine and pelvic joints.
Say the word arthritis or chronic illness in a crowd and you’ll instantly get advice on how to treat it even though you were not asking for it. Have you tried yoga? Have you tried turmeric? Have you tried going vegan? Have you tried stuffing crystals in your bra and panties while snorting kale? While they are coming from good intentions, some of the advice people give can be completely out there and dangerous to our health.
Self-care is a lot different for someone with arthritis compared to someone without arthritis. That is because our self-care ends up being self management of our diseases. Exercise to clear your mind? We exercise to keep our joints happy. Bubble bath to relax? We have baths to soothe our achy joints. Nap once in a while? We are often forced to nap daily. Clean eating? We eat to avoid triggering flares. Self-care is not a luxury for us; it is a necessity.
Immunocompromised or Immunosuppressed
Putting this one in the list because it was one of the hardest parts of trying to understand life with rheumatoid arthritis from a patient perspective and those around us. People who are immunocompromised have a reduced ability to fight infections and other diseases and we heal slower after an injury. This may be caused by certain diseases or conditions, including many forms of arthritis like rheumatoid arthritis, lupus, ankylosing spondylitis, and psoriatic arthritis. It may also be caused by certain medicines or treatments, such as many of those that treat autoimmune and inflammatory arthritis.
Putting this one here because I started advocating for arthritis before I really knew what the word for what I was doing was called. A patient advocate has no definite role. Patients can advocate in many different ways like volunteering with an organization, fundraising, participating in research, taking part in board and community roles to speaking to government officials and decision makers. Patient advocates could be online using different social media channels to educate others on their condition. There is no rule book on how to advocate and we are more powerful when there are more of us advocating.
Most people expect arthritis to be just joint pain but that’s so not the truth. Malaise describes how we feel when living with an autoimmune or inflammatory form of arthritis we tend to feel like we have the flu.
A flare is a time of heightened disease activity. A flare can last from a day to months. They come and go, often unexpectedly and no matter how hard we try they often can not be avoided. Flare triggers include stress, our environment, food, smoking, alcohol, and illness or injury. We can even send ourselves into flares by over exercising or over resting.
“When you hear the sound of hooves, think of horses, not zebras.”
The zebra is an official symbol for rare diseases and is noted for its black and white stripes, which refer to each patient’s uniqueness when living with a rare disease. Everyone has his/her own stripes, those characteristics that make each individual distinct. It is a phrase taught to medical students throughout their training to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses and are expected to learn common conditions. That doesn’t work for everyone though, “zebras” are out there and can not be forgotten about. Getting a diagnosis and treatment can be more difficult for those with rare conditions. There are rare forms of arthritis and musculoskeletal conditions as there are over 200 kinds.
Devil’s Tic Tacs
This is a nickname for prednisone. While prednisone can make us feel better, it can also make us to be difficult to be around. Prednisone is known to cause mood swings like anger, agitation, hunger, and insomnia. But that’s not all the devil’s tic tacs can cause….
Moon Face and Body
Unfortunately prednisone is known to cause weight gain and can change our bodies in uncomfortable ways. Prednisone can make someone’s face rounder because of weight gain and water retention. Be kind — and do not comment on someone’s changing body after a diagnosis or treatments.
The Nightmare Before Medications
For me, this is about a week before my monthly infusion but can be more often for others on different kinds of medications. The nightmare is being able to feel our symptoms creep up as our medications wear off. Unfortunately insurance won’t allow us to shorten the time in between medications to not have to go through this nightmare before our medications. The nightmare can also refer to our anxiety before taking medications; not knowing how we may react to a new one or if we have a fear of needles.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.