Rheumatoid arthritis is much more than “just” joint pain.

More often than not, when I tell someone I live with rheumatoid arthritis (RA) they’re shocked that I am young and look healthy. Or, they confuse my condition with the most common form of arthritis — osteoarthritis — because they don’t really know what RA is.

There are over 100 forms of arthritis, many of which come with far more than just joint pain.

My disease, rheumatoid arthritis, is a systemic autoimmune disease — which means it impacts much more than some of my joints.

Let me explain what I need you to understand about living with rheumatoid arthritis from my lived experience with the disease.

Rheumatoid arthritis is more than just joint pain

Inflammation spreads to our organs such as the brain, heart, lungs, kidneys, eyes, and skin. Other conditions (called comorbidities), commonly occur alongside RA, including:

For me, fatigue is by far the most debilitating of my symptoms.

It doesn’t care what age you are

RA isn’t just a disease for older people. I was diagnosed at age 29 but had been living with symptoms since I was 24.

At that age, I didn’t think something like arthritis could affect me either. Any complaints with my health were often met with “start exercising and lose some weight.”

It’s often invisible

Just because you can’t see it doesn’t mean I can’t feel it.

It’s common for rheumatoid arthritis to be an invisible disability. Effective therapies are available which can prevent the need for a cane, wheelchair, or walker. However, someone living with RA may still have mobility issues or severe invisible chronic pain.

It can take years living with RA before it becomes visible. Effective treatments can stop visible damage.

It’s unpredictable

I can be fine one day and the next completely bedridden with pain and fatigue. Some days my joints can handle an activity, but some days they can’t or I can only handle a small amount of activity.

Some days my brain is sharp, while others I am foggy and forgetful.

There are times I can tell when I’m going to have a bad day. For example, when it rains or I have a big event, I know to book one to two days after for rest and being kind to myself.

However, fatigue often hits without a sign, forcing me to cancel plans. I’m not a flaky person. It’s the disease.

Rheumatoid arthritis fatigue is more than feeling tired

Don’t excuse your daily sleepiness with fatigue.

Fatigue from a chronic illness is debilitating. Can’t-think, can’t-talk, can’t-move, can’t-function fatigue can leave me bedridden for days or weeks and isn’t something I can push through.

It’s something that no amount of coffee can fix.

Fatigue is like living with an invisible wall inside me that stops me from functioning normally. It causes frustration with just about every aspect of daily life.

There is no cure

No diet, herb, or spice is going to cure me — even if you read it on the internet, saw it on a documentary, or heard about it through someone else.

The truth is, rheumatoid arthritis is an incurable disease. If it were that easy to cure with, say, turmeric, then arthritis and other rheumatic conditions wouldn’t be the number one cause of work disability in the United States.

But if you search Dr. Google, turmeric is suggested to cure just about every condition.

Supplements, certain exercises, and a well-balanced, healthy diet that avoids inflammation-triggering foods will certainly help my disease. But none of these things will cure me, and advice is best left to a registered healthcare provider.

Having RA makes me high-risk for infections

I am a germaphobe for a reason.

Living with inflammatory arthritis puts me at an increased risk of infection and conditions like pneumonia and COVID-19, which can range from mild to life-threatening.

Even the common cold can be quite difficult to pass off for me and could be life-threatening,

The increased risk is both from the disease itself and from the immune-suppressing medications I take to treat the disease.

Comorbidities can further suppress my immune system, and research shows that I am at a higher risk for certain cancers.

All forms of arthritis are serious and should be taken as such by everyone, even those who don’t live with the condition.

Remember to be kind, supportive, and understanding — many of us are fighting an invisible battle with our own bodies.

Find a community that cares

There’s no reason to go through a rheumatoid arthritis diagnosis or long-term journey alone. With the free RA Healthline app, you can join a group and participate in live discussions, get matched with community members for a chance to make new friends, and stay up to date on the latest RA news and research.

The app is available on the App Store and Google Play. Download here.

Healthline

Eileen Davidson is a Vancouver-based invisible illness advocate and an ambassador with the Arthritis Society. She’s also a mother and the author of Chronic Eileen. Follow her on Facebook or Twitter.