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.
Joint Juice
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
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.
Unsolicited Advice
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
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.
Patient Advocate
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.
Malaise
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.
Flare
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.
Zebra
“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.
