Community Views: Changing Perceptions of Rheumatoid Arthritis

Before a rheumatoid arthritis (RA) diagnosis, many people have an incomplete picture of the disease. We were curious about how their perception of the disease changed after they were diagnosed.

How did your perception of RA change after your diagnosis?

So we asked the Facebook community, “What do people here believe about RA that they didn’t previously believe? Why did it change?”

The answers made it clear that living with RA brought many new insights.

Debilitating pain

Underestimating the severity of the pain was the most frequent response. RA pain is debilitating. It often stays between 8 and 10 on the pain scale. Some people have periods when they cannot move.

“I didn’t believe the pain was debilitating, and now that I have it, it’s more than debilitating.”

“That it is a disease that can literally bring you to your knees.”

“That a flare can put you down in pain so bad you can’t walk or help yourself get up.”

So many symptoms

Fatigue, pain, brain fog, organ damage, joint deformities – RA comes with many symptoms. It is a whole-body experience, not limited to a few aches and pains. The daily impact of RA on their bodies shocked many people.

“That it actually causes organ damage and terrible chronic fatigue, not just pain and deformity.”

“That the brain fog and fatigue can be continually diminishing.”

“That one day you can feel fine and the next day not. Flares can come on at any time and last a year or a couple of hours."

What management?

When newly diagnosed, people often hear that RA is not curable but it is manageable. After years of living with symptoms, however, many feel discouraged. They struggle to manage their symptoms. And they worry about ever reaching the elusive promise of remission.

“I was told 35 years ago that while it can’t be cured, it can be controlled and go into remission. I’m still waiting for that control and remission.”

“The oftentimes quick progression of the beast, and even when you do everything right, it can and will wreak havoc on you.”

“The pain is constantly changing in location and intensity, and I can’t find a medication to manage it consistently.”

Lack of understanding

Many respondents expressed frustration with others' lack of understanding of RA. Friends and loved ones assume RA is similar to arthritis. It is hurtful that they do not take the time to learn the difference. Too often, they make assumptions that people with RA are lazy or exaggerating their symptoms.

“How everyone will dismiss your pain and disabilities.”

“I don’t even bother to explain or tell them about it. It’s always: ‘Oh, I’ve got a touch of arthritis too!’ OK then.”

“People say, ‘Oh, it’s old age arthritis.’ No. It is different when you have RA.”

“No one understands or listens when I need to slow down for self-care.”

Deformation

RA attacks the joints in the body. This can lead to loss of alignment and shape in hand and foot joints. Many people were not prepared for that process when they were first diagnosed.1

“Honestly, because of the word arthritis, I, like most people, just thought I would have a few aches and pains. NEVER thought I would have actual permanent deformation.”

“The nodules. The swan neck fingers. The prednisone moon face. Nothing can prepare you for it – not one bit of it.”

“I knew it was disfiguring; I didn’t know how much it affected your skin and organs.”

Weather sensitivity

Growing up, many people hear their elderly relatives predict the weather based on joint pain. Until their RA diagnosis, many considered that folklore. After living with RA, they understand how the weather can affect their symptoms.

“That the weather affected my grandpa’s rheumatism because my body is a freaking barometer now.”

“That people can feel the weather changes in their joints. I always thought that was a myth. My own experience and confirmation from my doctor changed my mind.”

“That you can predict the weather.”

Thank you

We appreciate everyone who shared their insights with us. We hope it is affirming to know that so many share similar experiences of living with RA.