10 Realities of Living with RA That Might Surprise You

Managing a chronic condition requires so much more than just soothing your symptoms — you have to adjust for it in all corners of your life.

Rheumatoid arthritis (RA) is an autoimmune disease that causes pain, swelling, and deformities in small joints like the hands, wrists, feet, ankles, and neck. Many people may not know that it’s a systemic disease that affects the entire body. RA can cause weight loss, fever, and fatigue and even impact other organs like the lungs, heart, and eyes.

While joint pain and other physical symptoms are a significant part of living with RA, it’s much more than just that. If you have RA, you know it affects almost every part of your life.

Here are some realities of living with RA that go beyond the basics.

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You might feel like you’re coming down with something

RA can feel like you’re always catching a cold. Fatigue, brain fog, and generalized weakness are common symptoms of RA and can even be side effects of medications used to treat it.

This under-the-weather feeling is common. Make sure you budget your spoons when you’re feeling worn out.

Symptoms can sneak up on you

Sometimes your symptoms affect your life in ways you didn’t realize. For example, your hand grasp and strength may change, but you don’t realize to what extent until you drop your groceries or try to open a drink from a convenience store.

I try to take these changes in stride and think of it as learning more about my RA every day.

You feel hungover without partying

Some of the medications that treat RA can cause “medication hangovers.” You feel as though you were out partying the night before, but you weren’t.

These hangovers are a not-so-pleasant party favor from RA. I indulge in extra self-care on days when I feel particularly sluggish.

You may feel invisible

For many people, RA is an invisible illness. Unless you use assistive devices like a cane or wheelchair, people can’t see your condition by simply looking at you.

Society typically shows less empathy for people with invisible illnesses because it’s not obvious you’re hurting, like a broken bone in a cast. You may have to constantly explain your disease, its symptoms, and how it affects your life to others.

Learning to be your own best advocate can help you confront any stigma you face about your invisible illness.

RA is expensive

Whether you’re counting copays and deductibles or tracking gas, missed work, and child care, it all adds up. RA, like any chronic illness, is costly to manage.

Learning more about the financial impact of living with a chronic condition can help you reduce some of the costs.

You never know what tomorrow will bring

Tomorrow is always a mystery with RA. Your symptoms may change day to day or even hour by hour, and there is no predictability. Making plans and sticking to them can be challenging when you can’t know how you’ll feel then.

Thinking positively about the mystery can help you navigate the unpredictability of RA without letting it get you down.

You start to blame RA for everything

You’re never really sure if a new symptom is because of your RA, an injury, aging, or another chronic condition you may have.

Wake up with a neck ache — is it RA? Start vomiting after lunch — is it RA? You have no sex drive — is it RA?

You may feel lonely

RA’s unpredictability can interfere with your relationships, commitments, and social schedules. When you have RA, you might miss work, school, and other life events more often than others.

If you avoid making plans in anticipation of RA symptoms or break plans frequently, missing out can be isolating. Online support groups like Bezzy can help you feel less alone from the comfort of your home.

You become a scheduling pro

Your healthcare team likely includes a variety of medical providers with varying schedules and requirements. Your medications may also have very specific schedules and times now, too. RA requires a lot of careful planning and meticulous organization for your care plan to line up with your life.

You have to have some tough conversations

Talking with people without chronic conditions about your RA can be met with mixed responses. Some people may respond without compassion or empathy, not realizing RA’s severity or life-altering impact. Others may overdramatize your situation and insist that you don’t participate or even isolate due to fear of a contagious disease.

Even though it can be hard, talking with your loved ones about your condition can help them better support you.

The takeaway

RA does change lives, but remember that it doesn’t have to change you. It can make you emotionally stronger, smarter, and more empathetic.

If you want to read stories from people living with arthritis, check out “Keeping It Real With Arthritis: Stories From Around the World.” Hearing from others just like you can be a reminder that you’re not alone on this journey.