5 Things Only Someone with Rheumatoid Arthritis Would Understand

Five members of the Bezzy RA community shared what other people don’t understand about living with rheumatoid arthritis.

Rheumatoid arthritis (RA) is an autoimmune disease that most commonly causes pain, swelling, and stiffness of the joints. In more severe cases, RA can also lead to loss of function or deformities of the joints.

When you’re diagnosed with a chronic illness like RA, it can feel like you’ve become part of a club that you never wanted to join. It can feel isolating if your friends, co-workers, and family members aren’t able to relate to the impact RA has on your day-to-day life.

Because the symptoms of RA are mostly invisible, it can be challenging for those who don’t live with RA to really understand just how debilitating and disruptive it can be.

It’s important to remember that even if your symptoms can’t be seen, they are very real and your experiences are valid.

It’s also important to know that even if those in your social circle cannot understand what it’s really like to live with RA, you’re not alone. Connecting with others who also live with RA can help you feel more supported as you navigate symptoms, treatment, and RA-related lifestyle changes.

The Bezzy RA community is a great place to find people who know firsthand what it’s like to live with RA. Community members shared five things about RA that you would only understand if you live with it, too.

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It can disrupt your career

“I get very angry at times trying to figure out my next move with rheumatoid arthritis. I have always worked a lot and I enjoyed my work. Now I feel like I’m tired, and drained most of the time. I’ve missed more work in the past 6 months than I had in 20 years.” — Donna49

It’s so unpredictable

“Having rheumatoid arthritis is so unpredictable, you never know how you are going to feel from one day to the next“ — Monique Hamil

Sometimes I need to cancel plans

“Sometimes I make plans early on and then, at the last minute, I have to cancel due to how I feel. I always think back to the old days when I wish I could just pick up and go like I did then, without having to worry about pain.“ — Happy place-beach

The pain is unbearable

“Sometimes I wake up really agitated and grumpy. I just want to complain to the world about how my body is achy, I hurt like somebody beat me up, and my head feels like it’s going to blow up.“ — NonniePam

It’s hard to wrap your head around it being incurable

“Knowing there will be no end is a huge pill to swallow between the symptoms, medications, and side effects of the medication. I do not like my attitude, and I’m the only one that can do anything about it! It’s difficult to try to explain to others, so now I am even less social than before.” — DiannaKay

The bottom line

Being diagnosed with RA can be life-changing. Despite how big of an impact RA can have on your day-to-day life, to outsiders its symptoms are usually invisible.

Navigating RA can feel particularly difficult if it seems like no one around you understands what you’re going through.

The Bezzy RA community gets it. Whether you’re looking for tips about starting a new anti-inflammatory diet, advice for talking to your rheumatologist, or just a place to vent, the community is here for you.

Article originally appeared on October 28, 2021 on Bezzy’s sister site, Healthline. Last fact checked on October 28, 2021.