With Rheumatoid Arthritis Awareness Day on February 2, this is a great time to talk about what the disease actually is, and what living with it is like. 1.3 million Americans live with rheumatoid arthritis (RA), or 0.4%. That’s such a small percentage that many people recognize the name of the disease but don’t know what the illness is actually like. As someone who has lived with it for over 16 years, I’m here to shed some light on it for you and to hopefully clear up some common misconceptions.

Rheumatoid arthritis is an autoimmune disease in which the immune system attacks the joints. There is no known cause, although scientists do believe that genes and environmental factors can contribute. RA is a chronic illness, meaning there is no cure, although there is remission.

Misconception 1: RA is the same as arthritis. Fun fact—there is no disease that is just “arthritis.” “Arthritis” refers to over a group of more than 100 illnesses and conditions. When people talk about the form of arthritis that many people develop as they age, they’re talking about osteoarthritis (although even that happens to people of all ages). RA differs from osteoarthritis in that it’s an autoimmune disease, while osteoarthritis is more general wear-and-tear. Learn more about osteoarthritis here.

Misconception 2: RA only affects older people. It can actually affect anyone at any age, including children. I personally developed symptoms at age 10. There is a condition called JRA, or juvenile rheumatoid arthritis, but that is an umbrella condition encompassing many autoimmune or inflammatory illnesses affecting children. 300,000 have juvenile arthritis, and many will go one to be officially labeled rheumatoid when they get older. Learn more about JRA here.

Misconception 3: RA is no big deal. For some this is true, but for many more, this is not. The symptoms alone can be incredibly painful and limiting. There are many things that I can’t do because of my arthritis or that I don’t do because it will anger my arthritis, and, if not treated correctly, joints can become permanently damaged. I have had two knee surgeries because of my RA. But even worse than the symptoms themselves is that, if not treated correctly, RA can create other conditions. My RA caused me to develop fibromyalgia, anemia of chronic disease, and endometriosis. Having RA doubles the risk of having heart problems, including heart attack and stroke, because the inflammation from RA can move into the heart. And that’s not the only scary complication—this inflammation can also lead to lung disease and nerve damage, amongst other problems.

Misconception 4: Anti-inflammatory medication is all patients need. For some, yes, but for many more, this isn’t true at all. RA is an autoimmune disease that causes inflammation, so anti-inflammatories might help some of the inflammation, but it won’t help the overall disease. And because this is an autoimmune disease most of the medications suppress the immune system, which means that we are more likely to get sick and to get more sick than other people. The medications that make the most difference for people with moderate to severe cases of RA are called biologics, and they include medications that you’ve probably seen commercials for like Humira and Enbrel. Biologics go after targeted aspects of the immune system; some go after the TNF (tumor necrosis factor, not connected to tumors), others after B cells, and others after other things. Some RA medications are pills, some are injections, and some are infusions. Most people are on multiple treatments that do different things. I personally have a 5-hour infusion once every 4 months in addition to taking a boatload of pills every day.

How is it diagnosed? The most accurate diagnosis comes from an appointment with a rheumatologist, in which you talk about various symptoms and they examine you, as well as performing a blood test. 15% of RA patients, though, test negative to the blood test. This is called being seronegative, and it’s why you really need to meet with a rheumatologist. Symptoms include joint pain, but those might not be the only symptoms you have. Patients often also have some combination of morning stiffness, fatigue, and a low-grade fever.

What is living with it like? I’m going to speak here from a personal experience, because no two RA patients are exactly alike. On a good day, I have around or less than 30 minutes of morning stiffness and I’m able to walk up to a mile, cook and clean up a meal, and work for more than 5 hours on my various projects. On a bad day, my morning stiffness lasts up to 2 hours and I’m unable to leave my house or do any work. An average day is somewhere in between these extremes. I do yoga and physical therapy exercises every day and I try to walk around half a mile over the course of the day, but all of these things depend on the severity of my pain. My pain gets worse when we have a change in the weather pressure, like if the temperatures are going to change dramatically or if it will rain in a day or so. Eating gluten, dairy, corn, soy, egg, or hydrogenated oil angers my RA. My joints can’t handle me walking over a mile and a half. If I go somewhere like an airport or a museum, I need to use a wheelchair, but sitting for more than an hour and a half increases my pain. I am unable to live independently or work full-time. But I stay optimistic, because the scientific community’s understanding of rheumatoid arthritis has grown a lot since I was diagnosed in 2010, so I can only imagine how much it will change over the course of my lifetime.

Kate Mitchell is a blogger, writer, and editor. She lives in Boston with her family and pets and knows way too many fun facts about English literature and history. On Kate the (Almost) Great, she writes about chronic illness, millennial lifestyle, and writing and blogging. She is currently working on her second novel.

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