“You definitely have rheumatoid arthritis.”
I’ll never forget those words — coming from a stunning Harvard graduate, mother-of-two rheumatologist. The rest of the doctor appointment was a blur.
The thing is, though, I’ve never been blind to rheumatoid arthritis. It was always in front of me. It was the reason my aunt was rarely without her wheelchair. But even though I knew my aunt had rheumatoid arthritis, I didn’t really know what RA was. I figured it was just joint pain from being older and overweight.
I was so very, very wrong.
The beautiful woman passed away the same week I was diagnosed with seropositive rheumatoid arthritis. This was the eye-opener I didn’t know I needed.
Now I would have to learn everything about rheumatoid arthritis, an autoimmune disease that affects 1 percent of the population. I knew of autoimmune diseases like type 1 diabetes and multiple sclerosis. I didn’t know that arthritis has autoimmune forms as well. I did not know much about the specialty of rheumatology and how it would have a big impact on my life.
Rheumatoid Arthritis Is Probably Not What You Think
RA patients are not walking around with tell-tale glowing red dots of where our joints or organs are affected by RA inflammation. You can’t see the dark cloud of fatigue glooming over us, unless you notice its subtle signs. Many of us are suffering in silence and invisibly. We can take years to get a diagnosis because of the misconceptions surrounding arthritis — for example, the myth that arthritis doesn’t affect young people — and because chronic pain is often not taken seriously. It can take multiple doctors to sift through our symptoms, lab tests, and imaging scans to figure out what the heck is going on.
When I was first diagnosed with RA, I struggled in silence, disbelief, and shame. I had no clue how to communicate what I was going through to those around me. I looked perfectly healthy. I was only 29 and a new mom. Thoughts like these swirled through my head and I imagined other people thinking them too.
It was probably just my hormones and emotions going wild.
I needed more coffee, exercise, or sleep.
I needed to lose weight.
Why couldn’t I push through the pain and fatigue?
It’s just arthritis.
I’m too young for it to be anything serious.
I look perfectly fine.
But in reality, I was now living with an autoimmune disease and it was doing things inside me that I couldn’t ignore. I decided to fight my new enemy. I needed the help of a specialist, disease-modifying medications, and more information.
One of the best ways to fight, after all, is through education. Educating myself — and educating those around me.
After reading everything I could online, working with arthritis nonprofits in Canada where I live, and squeezing as much knowledge from my doctor as I could, I began to feel comfortable explaining RA to others. Here’s how I do it.
I Want You to Understand: RA Is an Autoimmune Disease
A healthy immune system protects the body by fighting off foreign invaders such as viruses and bacteria. In an autoimmune disease, the immune system mistakes a person’s own tissues as foreign invaders. In the case of rheumatoid arthritis, it’s the synovium, which is the membrane that surrounds the joints. This puts into play an inflammatory process that causes RA’s telltale symptoms of swelling and pain. Because RA is a systemic disease, this inflammation can also affect the entire body: the skin, eyes, lungs, heart, kidneys, salivary glands, nerve tissue, bone marrow, and blood vessels, to name a few.
I Want You to Understand: Symptoms Are Not Just Joint Pain
Pain, swelling, fatigue, malaise, fever, cognitive dysfunction, memory issues, weight loss, and depression are common non-joint symptoms or side effects of having rheumatoid arthritis. We also have comorbidities to deal with (for example, heart or lung disease), which exacerbate our symptoms.
Pain isn’t always the most persistent or bothersome symptom either — it can be fatigue.
I Want You to Understand: Rheumatoid Arthritis Is Different from Osteoarthritis
While there are many similarities between osteoarthritis and rheumatoid arthritis, they are quite different diseases. Osteoarthritis is the most common and well-known. OA involves loss of cartilage between joints due to age, wear and tear, or injury. It can cause significant pain and disability: I’m not trying to minimize it in any way. But OA is not an autoimmune disease. So the treatment and course of disease progression is quite different from that of RA.
Cancer patients don’t just say they have cancer. They say which type of cancer — breast or prostate or lymphoma. The same goes for arthritis. There are more than 100 different kinds of arthritis, actually. And keep in mind that not all forms of arthritis have arthritis in their name either, like ankylosing spondylitis or gout. Arthritis is a noun that means painful inflammation and stiffness of the joints. Like cancer, it is a vast term for many different conditions.
Like cancer, every case of arthritis is different for the person living with it.
I Want You to Understand: Complex Medications Are Involved
Before I was diagnosed with rheumatoid arthritis, I never knew “chemotherapy” could treat anything but cancer. Then my doctor prescribed me methotrexate, which is a common and often first-line medication used to treat rheumatoid arthritis. Today’s RA medications don’t just treat pain and swelling. They modify they immune system to help stop inflammation in its tracks. Categorically, these are called disease-modifying antirheumatic drugs (DMARDs).
Methotrexate was originally used as a type of chemotherapy. Then researchers discovered that — in much smaller doses — it could also be used to treat certain types of inflammatory arthritis. Methotrexate for RA doesn’t cause the same degree of side effects that it does in chemotherapy doses, but it still can have side effects, including nausea, GI issues, and hair thinning or loss. I had to get monthly liver tests and I could no longer drink alcohol while taking it.
It’s a rare RA patient who doesn’t endure trial and error to find the right medication, or mix of medications, that works for them. I’ve gone through 18 different medications (so far), including three biologics (which are a newer and more targeted category disease-modifying drugs). Even then, I have to work at maintaining a healthy lifestyle to minimize how RA affects my life.
I Want You to Understand: The Risks of Having Rheumatoid Arthritis
Rheumatoid arthritis itself, along with some medications used for treating rheumatoid arthritis, can increase your risk of osteoporosis and can weaken the immune system, leading to more infections. Rheumatoid arthritis can increase your risk of hardened and blocked arteries, as well as inflammation of the sac that encloses your heart. Those with RA have an increased risk of inflammation and scarring of lung tissues. We are at an increased the risk of lymphoma, diabetes, heart disease, obesity, and lung disease. And that’s just the beginning of the list of comorbidities.
I try not to think too much about the long-term consequences of having RA. After all, I was diagnosed at age 29 — so that’s decades and decades and decades of living with chronic inflammation wreaking head-to-toe havoc on my body. Most people without RA can’t imagine how scary this can seem if you really stop to think about it.
How to Support Someone Living with RA
Treat us with kindness and compassion. Understand our limitations. It’s not us who are flaky; but rather our disease can make us flaky when we don’t feel well. Sometimes we just need a friend. Sometimes we need physical or emotional help. A little bit of support can go a long way for us, in ways that medicine or health care professionals can’t help with.
- 14 Things to Never Say to Someone with RA (and 3 You Totally Should)
- 23 Coping Skills Mental Health Experts Wish You’d Practice
- Self Care Tips that Patients Swear By
Subscribe to CreakyJoints
Subscribe to CreakyJoints for inspiration and advice on living with arthritis.