Rheumatoid Arthritis: How Will It Change Your Life?

Knowing what to expect can help reduce stress about the future

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It's daunting to be diagnosed with rheumatoid arthritis. While you likely don't know much about the disease at that point, unless someone close to you has it, you know enough to recognize that it is potentially disabling and life-altering.

I asked a group of people with rheumatoid arthritis what they wanted to know immediately after they were diagnosed. In most cases, their internal dialogue did not take them to what treatment would be prescribed, whether they needed physical therapy, or any other immediate management plan.

Their first thought was, "How will this change my life?"

The short, accurate, honest answer is really not going to satisfy you. But, here it is—the disease course of rheumatoid arthritis is variable and unpredictable. Even with treatment, rheumatoid arthritis is punctuated by uneven disease activity. Deductive logic would suggest that severe onset of rheumatoid arthritis and a severe disease course may be associated with greater, life-changing consequences. But, even that cannot be guaranteed. Clearly, disease activity at onset combined with treatment response are the best predictors available. Is treatment hitting the targeted goals? That's what determines the future.

Let's consider some specific questions from people with rheumatoid arthritis. Remember, the answers depend on disease severity and response to treatment.

Will I Be Able to Keep Working With RA?

There is some good news to report regarding this question.

With the development of more aggressive treatment options, there has been improvement. In 1980, it was reported by Yelin that over 50 percent of people with rheumatoid arthritis who worked before disease onset stop working within 10 years of diagnosis. By 2003, it was reported in Clinical and Experimental Rheumatology that 20 to 30 percent of people with rheumatoid arthritis become permanently work disabled within two to three years after disease onset.

In a 2012 issue of Annals of the Rheumatic Diseases, biologic drugs as well as aggressive use of traditional DMARDs was linked to "substantial gains in disability outcomes."

This means that you have a better chance than ever to continue working. But, there is a possibility that you may need to adapt your work environment, use adaptive equipment, or change your job or career—especially if you have a physically-demanding job.

Will RA Affect My Marriage or Close Relationships?

It is a fact that the divorce rate is high among married couples when one partner has rheumatoid arthritis. It has been estimated to be 70 percent higher than the general population. The disease is recognized as an additional stressor on the marital relationship in general, and specifically with how it impacts sex and intimacy. While not everyone will have an ideal spouse or partner, success or failure of the marriage when rheumatoid arthritis is added into the mix largely will depend on the willingness and ability of both partners to adapt to the changes and intrusions imposed by the disease.

Those who can adapt will fare better, obviously.

Will I Be Able to Play and Roughhouse With My Children or Grandchildren?

The ability to play or roughhouse will depend on your physical limitations. Even if you are able, you will want to pay attention to joint protection principles and you will need to be kind to your affected joints. Try to interest your children or grandchildren in activities that are not as physically demanding. Depending on their age and ability to understand, teach them that watching a movie together is just as special as rolling around on the floor together. Teach them that the key is being "together" to reduce the negative impact that chronic arthritis has on the family.  

Will I Lose Friends?

I would love to tell you definitively that you will not lose friends because of your rheumatoid arthritis. The truth is, you might. Some friends don't want to deal with it. Some friends lack patience. Some friends want you to be ready to go at a moment's notice. Can they adapt to your new circumstance? Possibly. It depends on the person. If your friend thinks that you are lazy or accuses you of faking your illness, you have problems which may be difficult to overcome. Real friends will make the effort to learn and adapt. This is the time when your real friends stand out.

Will I Have to Give up Activities I Am Passionate About, Such as Tennis or Sewing?

If your affected joints are used, or overused, when you participate in your favorite hobby or activity, you may need to make adjustments. For example, if you have a knee that is affected by rheumatoid arthritis, tennis may no longer be optimal. You may be able to keep playing if you wear a knee support, or if you cut back on the intensity or frequency of your game. If your hands are greatly affected by the disease, sewing may no longer be an optimal activity.

Your ability to continue with a specific activity really depends on how much it impacts your affected joints and what adjustments can be made, if any. Again, you will want to protect your joints and stick with activities that don't add excess burden. 

Will I Be in a Wheelchair in 5 to 10 Years?

This also is not predictable. Perhaps the question should be rephrased as "how long can treatment maintain joint function"? If only that was determinable. Again, with early, aggressive treatment and the development of more effective medications, there is a better chance than ever for successful treatment outcomes, making disability not an inevitability. Disease management goes beyond your medication regimen, too. You need to include regular exercise to keep your joints moving and healthy. You also need to protect your joints and focus on actions that may help preserve or improve joint function and joint health.

Will I Be in Constant or Worsening Pain Throughout My Life?

Pain is the primary characteristic associated with inflammatory types of arthritis, such as rheumatoid arthritis. To date, there is no cure for rheumatoid arthritis. It is a chronic disease. With a diagnosis of rheumatoid arthritis, the expectation is that you will have some level of pain throughout your life. Joint pain is not necessarily constant. More likely, the level of pain is variable. But, it is present. Managing pain effectively becomes essential.

Will My Condition Worsen Quickly or Gradually?

The course of rheumatoid arthritis is not predictable. While you would like to know if you will be able to achieve remission or how quickly the disease will progress, the only clue may be whether disease onset for you was sudden or gradual, severe or mild. Also, did you quickly respond to your medications or did you try many medications before finding the one that seemed to best control your symptoms? While that may offer some perspective, we still are forced to conclude that rheumatoid arthritis is an uncertain disease. 

The Bottom Line

Rheumatoid arthritis is variable, unpredictable, and uncertain. The best approach is to deal with the disease day by day.  If you learn to manage rheumatoid arthritis by focusing on its current symptoms and  its current impact on your life, you will be managing the future as well. At the same time, it is prudent to understand that things may change, even unexpectedly.  What would you do if you had to quit working and your financial picture changed? What would you do if you could no longer walk up the stairs in your home? If you get peace of mind from planning for possibilities, then do. 

Sources:

Krishnan E. Disability in rheumatoid arthritis in the era of biological treatments. Annals of the Rheumatic Diseases.February 2012.

McDuffie FC. Morbidity impact of rheumatoid arthritis on society. American Journal of Medicine. 1985 Jan 21;78(1A):1-5.

Sokka. T. Work disability in early rheumatoid arthritis. Clinical and Experimental Rheumatology. Sept.-Oct. 2003.

Yelin E., et al. Work Disability in Rheumatoid Arthritis: Effects of Disease, Social, and Work Factors. Annals of Internal Medicine. October 1, 1980.

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