What People with Rheumatoid Arthritis Wished You Knew

by Lene Andersen, MSW Patient Advocate

Living with RA can be frustrating

Living with rheumatoid arthritis (RA) can be extremely frustrating. You have to cope not only with the condition causing pain and fatigue, but also with a lack of understanding from other people. We asked the RA community what they most wanted others to know about the chronic illness.

Sick woman in bed

What RA feels like

“Like the worst flu you've had. Every day [and] for the rest of your life.” — @notoriousmoney

“It drains you, robs you of your energy, makes you feel heavy, slow, weak.” — Barbara

RA is an autoimmune disease that affects your entire body, causing fevers, pain, extreme fatigue, and feeling ill.

Doctor asked female teen patient feels

Not a disease of the elderly

“Age does not make a difference." — Joy

RA usually affects people between the ages of 30-50. However, it can happen as early as your teens and into your 60s and beyond. There are 1.3 million people in the U.S. who have RA, with women having the condition three times more often than men.

Heart pain

Not just about the joints

“It's my lungs, my hearing, my brain, my heart.... everything is affected.” — Margie

Despite the term “arthritis,” RA doesn’t just affect the joints. It’s a systemic disease, and its inflammation can cause damage to other systems in the body, including the skin and internal organs such as the heart and kidneys.

Rain jacket

Life with RA is unpredictable

“How unpredictable this disease is, feeling fine one day and struggling the next.” — Deb

It’s hard to predict how RA will act. It can be quiet for a while, only to flare up with an increase in symptoms for seemingly no reason. Some people find that their flares can be related to factors such as weather, activity, and certain foods.

Consoling her depressed Boyfriend

We don't make it up

“That it is real and not ‘all in my head’" — Melissa

Others may not be able to see the pain and fatigue that people with RA feel. It’s important to realize that an invisible illness is not something the person can control with the power of their mind. The disease is in control. It’s important to trust what the person tells you.

Change of plan

Plans will be cancelled

“When I tell you 'I can't do this or that today' — please just believe me. Don't ask, don't push — just accept.” — Kari

Many people with RA are hesitant to make plans, because the unpredictability of the disease so often means cancelling. Having a Plan B can help. For instance, if going to the movies won’t work out, watching a DVD at home might.

Below view of female scientist looking through a microscope

A cure is not simple

“That we HAVE tried just about every 'remedy' you're suggesting.” — Paulicia

RA is a complex condition about which much is unknown. Nothing about it — the treatment or living with it — is simple. Suggestions that curing yourself is as easy as eating X or taking Y goes against scientific evidence and can be hurtful to the person living with RA.

Depression in teenagers

RA changes you

“How it takes away who you were [and] changes you in to someone you don't want to be.” — Barbara

Living with RA means living with the loss of the healthy person you were, and becoming someone new. This can lead to depression and sadness. Support and understanding from family and friends can help in finding acceptance of the new you.

Young couple in wheelchair enjoying time outdoors

We are all different

“That everyone's pain is different.” — Neen

RA pain ranges from mild to severe. Some are in remission, others have high inflammation or a disability. Some people with RA can be very active, even athletic, whereas others need to use canes or wheelchairs. The disease affects everyone differently.

Happy couple smile

You learn to cope

“Just because I'm smiling doesn't mean I'm not in pain.” — Jennifer

People adapt and adjust to living with RA, even to high levels of pain. They find ways of connecting to life again, to smiling, working, participating in family activities and being active members of the community. Focusing on life often means not showing how much RA affects them.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.