Rewriting the RA Rulebook

Patient Expert

A chronic illness such as rheumatoid arthritis (RA) can be a game changer. The rules you’ve lived with may suddenly be cast to the side. Your playbook no longer serves you as you find yourself waiting, wondering, and worrying about how best to proceed.

What are the rules for getting through your days when energy wanes, pain casts a long, dark shadow, and you have nothing left for anyone, including yourself? How do you make peace with the changes that a chronic illness demands in so many aspects of your life? By accepting and understanding the nature of change, your condition and its demands, and shifting into a new mindset, you can rewrite the rulebook.

I recently watched Miss Fisher’s Murder Mysteries, a television series about a 1920s Australian socialite who solves murders in an elegant and expeditious manner. What struck me most about Phryne Fisher is that she is a rule-breaker extraordinaire, especially when you consider the expectations society placed on women during that time period. Perhaps you can channel your own Phryne Fisher to forge a new way of be-ing. RA will do it for you, so why not get ahead of the game?

Rules prevent chaos. They help maintain order and provide a template to help you function in the circles you move within: your family, friends, colleagues, community, and even your country. Rick Phillips, who has RA and diabetes, left some of his self-management rules on my blog. He says, “Driving is always iffy. Blood sugar going up or down will usually mean I have to relinquish the wheel.” He poignantly adds, “Long walks might be romantic, but not if you have to carry me.”

Hard-and-fast rules can lead you down the wrong path—a path that is riddled with “shoulds” which, when not accomplished, scatter bad feelings like garbage. Encounter too many of those bad feelings and you elicit the stress response, with cortisol leading the charge. In a study that found a link between psychological stress, disease, and inflammation, Sheldon Cohen, Ph.D., of Carnegie Mellon University explains, “Inflammation is partly regulated by the hormone cortisol and when cortisol is not allowed to serve this function, inflammation can get out of control.’”

On my blog, Amanda wrote, “All rules are out the window, old ones anyways. It’s a full-time job managing chronic illness.”

If the rules no longer apply, how do you move through your life with RA? I prefer to have guidelines: best practices for RA that include strategies that allow for flexibility in thinking and being, even when my body feels less than flexible.

Some of my guidelines include:

1. Engage in quality conversation with myself. I ask myself, what do I need, versus what I want. I discuss how to trust myself and listen to my body. There’s a paradox when it comes to RA and physical activity: There are times when the last thing I feel like doing is moving, but what I find is that movement and exercise help me feel better.

Listening to my body also includes having the right to say no. No, when my energy turns to dust. No, when I have too much on my plate. No, when I need time to regroup or to simply do nothing. But sometimes, when I am so tired I can barely breathe, an outing is just the thing to oxygenate my life. It brings me out of my vacuum and back into the world where the colors are brighter, the sounds clearer, and my pain greatly diminished. Another paradox.

2. Rummage around in my toolbox. To get the job done properly, a carpenter uses a variety of tools. RA can force you into a reconstruction of your life. I have a toolbox filled with emotional, mental, and physical tools that help me build a life.

3. Be open, curious, and optimistic. These are skills that help me put one, sometimes sore, foot in front of the other. Optimism is good for you and your RA.

4. Express gratitude. This helps to shift the focus from the pain and disability to a more productive way of being. It is also a potent way to address stress.

5. Remember that I am not a robot. In other words, I am not wholly dependent on my programming. I make choices. I make mistakes. I learn, change, and grow.

6. Recognize that I have RA, but it doesn’t have me.

Rules or guidelines? What is the best way for you to move through your life with a chronic illness?

See more helpful articles:

Self-Care is Not Selfish

How to Get Support for Chronic Illness When Your Family Lives Far Away

Setting Boundaries in Health Care