What people without RA need to know

Rheumatoid arthritis health activist Kelly Conway

By: Kelly Conway

Kelly was diagnosed with moderate rheumatoid arthritis when she was 37 after experiencing symptoms for several years. She is now a patient advocate and cofounder of the International Foundation for Autoimmune Arthritis.

The patient advocates featured in this section share their experiences of living with moderate to severe rheumatoid arthritis. Please note that these stories are not meant to represent patient experiences with any specific treatment. They may or may not be taking an Amgen product to manage their moderate to severe rheumatoid arthritis.

Talking about rheumatoid arthritis

When I was a kid, my aunt and neighbor both had rheumatoid arthritis. I remember my parents referring to it as "the bad kind of arthritis." My diagnosis scared me because I remembered their difficulties. I grew up with a realistic view of RA, so I was very surprised by the reactions I received from others when I told them about my diagnosis.

When I tell people I have rheumatoid arthritis, I get one of three responses:

1. "I have that, too! It’s in my knees."
2. "You are too young for arthritis."
3. "You look great! You don’t look sick at all."

Now, I understand myths about the Loch Ness Monster, Big Foot, and even the moon landing. What I don’t understand is how all of the myths about RA still exist in the day of modern technology. The misperceptions/myths about RA are abundant. I’ve had people offer suggestions to me about my diet, avoiding gluten, and drinking apple cider vinegar.

Little do most people know that I have tried all of these things, and nothing made a significant change in my disease activity or pain level. Of course, eating right and avoiding foods that cause inflammation could help me to feel better. I appreciate their thoughtfulness, but it also makes me feel like people genuinely do not understand my disease or how to help me.

Here are some common myths relating to rheumatoid arthritis:

Myth 1: All arthritis is the same.

Rheumatoid arthritis is different from osteoarthritis. There are actually hundreds of different types of arthritis. OA and RA are extremely painful, but RA is an autoimmune disease. It is systemic and affects my whole body and not just my joints. No two patients with RA are the same. The disease affects everyone differently.

Myth 2: Arthritis is an "old person’s disease."

Rheumatoid arthritis can develop throughout a person’s life. Children, teens, and adults can all have RA. My best friend’s son was diagnosed with juvenile idiopathic arthritis at age 13. The difference between osteoarthritis and rheumatoid arthritis is stark. It’s not caused by age or wear and tear.

Myth 3: Rheumatoid arthritis means I am disabled.

I remember taking Zumba classes with coworkers. Many were shocked that I would be able to participate in the afternoon class. It wasn’t easy, but I participated to a level that worked for me. There are times when I can’t walk or use my hands easily, but I still do what I can when I feel well. I might have a disability, but I am not disabled.

Debunking myths is why I try to advocate for those living with RA. Awareness is key.