Weather the Storm of RA with Baby Steps and an Umbrella

Patient Expert

Rheumatoid arthritis (RA) can be like an unpredictable rainstorm, drenching your intentions, and forcing you to retreat. Your destination is barely visible through the downpour, and the last thing you feel like doing is stepping out.

Pain, flares, doctor appointments, and low energy interfere with your ability to work toward a goal. These goals could be anything from finding a partner to having a family, building a career, getting fit, learning a language, or traveling the world.

Just as an umbrella shelters you from the rain, strategies can cover you as you step toward your goals.

These past few months have been particularly challenging for me. Disruptions included a surgery for a ruptured tendon in my thumb, a family member's failing heart, our dog's cancer diagnosis, and December, which can be a difficult month for me, anyway. Surgery and appointments, for both myself, and others, meant I didn't get to the pool as often as I normally do. I am more tired than usual. It didn't help that I did more comfort eating than I have in a long time. With a limited amount of energy, I spent more time hibernating.

Just one step, even if it's a baby one, brings you closer to your destination, so grab your umbrella and use these eight strategies to help you take those all-important baby steps to get yourself on the right track.

1. Stress

If I had a magic wand I would go back 40 years to when I was first diagnosed with RA. If I knew how stress (negative thoughts and emotions) impacted my overall health, I could have done something to improve my life. When I regularly transform my stress, I find that I live better. As a bonus, I am better-able to implement the remaining seven strategies. Stress interrupts the best of intentions. It contributes to inflammation. There's a cognitive effect that clouds your thinking. It leads to non-resourceful behaviors, such as eating poorly, “forgetting” to do your exercises, and focusing on the wrong things.

Start by noticing how you feel emotionally throughout the day. If you're unaware of your feelings, it's difficult to apply techniques that will allow you to shift into a more coherent way of living.

2. Self-care

A good self-care strategy dictates that you cut yourself some slack. You are living with a chronic, debilitating disease that often behaves in an unexpected manner. It leaves you exhausted, frustrated, and in pain. Give yourself a pat on the back because you are already learning how to live better with your chronic illness by visiting Recognize and acknowledge how you're feeling: “I'm sore. I'm exhausted.” Then use green light questions to move you in the right direction. What self-care strategies can I implement right now? How do I meet this deadline? Where can I get some help for _____?

3. Exercise flexibility

RA is often unpredictable. An hour can make a difference in how you feel. Even if your joints become rigid, take time to strengthen your flexibility “muscles” in order to get to where you want to go. Flexibility in all aspects of your life will help you negotiate your way through a disease that behaves erratically.

When you're in the middle of a flare, the last thing you want to do is move. Consider postponing your exercises until later in the day, when you are more limber. If you don't already do so, try yoga, tai chi, or my personal favorite, swimming. These gentle, easy-to-adapt exercises can help you maintain your mobility.

Flexibility is needed in how you conduct your daily routines, too. The unremitting fatigue of a chronic illness may force you to run your errands when your energy peaks. Be aware that plans can collapse under the heaviness of a flare. You may even have to change careers, as I have done — several times, now.

4. Be Stubborn

For decades, my friend has told me that it's my stubbornness that has allowed me to do the things I do. She went on to explain that she saw this as a source of strength in me. Whether it's pursuing a new treatment, finding and building your healthcare team, or working on maintaining or improving the mobility you do have, a little stubbornness can go a long way.

5. Patience

Chronic illness is a waiting game. For starters, there are appointments galore, from doctor visits to infusions, lab tests to physical and occupational therapy, and, of course, X-rays. Then there’s waiting for medication to kick in, or the flare to subside; funding to be approved and a cure to be found! With all the waiting, it can be hard to be patient, but the rewards are there if you are able to work on it. You'll have more peace of mind, which can paradoxically bring you closer to what you do want.

6. Think outside the box

In order to adjust to the different pace that life with RA sometimes demands, learn from others. Adopt and adapt their tricks. Be willing to experiment. For example, I enjoy the challenge of making things work for me by getting creative in my problem-solving. You might surprise yourself with what you accomplish. I use a nutcracker to open bottle tops. I carry a surgical glove in my purse for other tight-to-turn objects.

7. Self-talk

Use the kind of encouraging words you'd use for a friend. RA already beats you up. You don't have to reinforce that. Research shows that mixing it up by talking to yourself in the third person helps with emotional regulation, which can lead to better results, regardless of what you want to do. I use a combination of pronouns when I talk to myself: I, you, and she.

8. Celebration

Remember to stop and celebrate the small wins. Be on the lookout for them. An attitude of gratitude will take you a long way. A big goal can be daunting, especially if/when RA has other plans for you. When you break your goal into easy-to-accomplish pieces, enjoy a number of tiny celebrations that pave the way to the big party you have when you achieve your goal.

With appropriate treatment, life strategies, and support, you can live well, in spite of your medical condition.