What It's Really Like to Live With Rheumatoid Arthritis
It’s mystifying that rheumatoid arthritis (RA) is a common disease—affecting about one in every 100 people—and yet most people don’t know what it’s like to live with RA. Even though my own grandfather had the disease, I remember being stunned as I learned firsthand what RA is like. There are good reasons why RA is so baffling. Most RA symptoms are not visibly obvious, at least early on. And not only can RA vary a great deal in its severity, but its symptoms and progression can also change in the same person over time.
RA is a progressive disease, usually worsening over time. Fortunately, this progression can often be slowed by disease-modifying medications. But living with RA is hard. It is…
- Painful. Dealing with RA can be painful like no one can imagine. I’ve met men and women who say RA is more painful than a broken bone, kidney infection, or gunshot wound.
- Unpredictable. Many living with RA speak of the frustration of not knowing what to expect. For some, the disease waxes and wanes in an unpredictable pattern called flares. For many others, the disease is only progressively worse, requiring one medical procedure after another.
- Stuck. Sometimes people living with RA feel trapped with no way out. There’s currently no cure for RA. Response rates for medications are low, and remission is rare.
- Work. Some say managing RA can be like having a second job due to the many ways the disease impacts one’s health and requires multiple doctors.
- Stigmatized. Living with RA sometimes comes with a loss of respect, as I’ve read in countless emails from people with rheumatoid disease. Others may assume RA is an exaggeration because symptoms are not visibly obvious or that you did something to cause your illness.
- A loss. RA can lead to a series of losses, especially loss of function due to destruction of connective and structural tissues in the joints. But this also includes the loss of the life you thought you would live. Sometimes, that’s the hardest thing to get over.
Managing RA usually means fighting more than one of these battles at a time, so people with the disease tend to celebrate even small victories. After living with RA myself and working with other RA patients for more than 10 years, I have learned that fighting a chronic disease can help people become very resilient. It’s important to resist getting discouraged in your battle against RA so you can be ready for the next challenge. It helps to remember that you are not alone and most people with the disease face similar problems.
RA is often called an invisible illness because even if deformities become obvious, they are not noticeable to casual observers. And most people are not aware of several effects of rheumatoid disease that are extra-articular (outside of the joints).
Even if others don’t always realize what it’s like for you living with RA, fighting the disease can make you a more strong and compassionate person, which extends into other areas of your life.