Living with rheumatoid arthritis (RA) can be like living in quicksand. You try every day to climb out and into the sun, while the pain, fatigue, and isolation sucks you down into the darkness and depression.
Ten years ago, when coming back from a debilitating and life-threatening flare, I made the decision to be more conscious of finding a way to connect to joy as a way to cope. Alas, much like money, Mr./Ms. Perfect, and a size 8 pants, joy doesn’t get delivered to your door on a silver platter. I found out it takes work. I also found out what would help the process.
But before I get started, a word about depression. It’s not my intention in this article to in any way suggest that simply focusing on joy will get you out of a severe depression. Almost one fifth of people who have RA are significantly depressed and many, including myself, report having suicidal thoughts. Some people require the help of medication to get to a point where they can start developing coping skills. If you experience severe depression, please talk to your doctor. There is help to be found.
Before my flare, I saw a counselor for a few years. He used the cognitive behavioral approach which helps you to change the way you think about your illness and your pain. I believe it helped create the foundation for the work I later did to change my focus following my flare.
Dr. Laurie Ferguson, VP of education for CreakyJoints and writer of the Dr. Laurie posts, also recommends narrative therapy. “It helps you create some alternate storylines for yourself. You begin to get some flexibility and some feeling of choice about how you describe – and therefore how you think about – both pain and illness.”
This idea isn’t new. I’ve heard of gratitude journals for years, even decades, and to be honest, sort of scoffed at them. When you’re struggling with active RA and high pain levels, the idea of gratitude can seem somewhat alien. But it really does work. “It’s one of those ways that we can help the mind rest on something that takes us in a more calming and satisfying direction. It helps us shift the focus and broaden the sense of what our life is about,” Dr. Ferguson said.
Every night before you go to bed, think of five things for which you’re grateful. It can be as simple as a beautiful flower, pain meds when you needed them, or a few minutes with a purring cat on your lap. You’re allowed to repeat things from the day before, but stretch your mind and try to find something new. And yes, it has to be five things. Somewhere around the third, you can feel your mood shifting and by the fifth, you feel like you’ve had a pretty good day.
image credit: Lene Andersen
Mindfulness is a way of being fully present in the moment. It means focusing on what’s before you, whether it’s moving your hands in warm soapy water while you wash the dishes, petting that purring cat, or feeling the breeze through an open window. Mindfulness helps you “to be able to get a little bit of space between your thinking and your description of your experience. To be able to not just be your experience, but to know that there’s a you having the experience,” Dr. Laurie said.
We are so used to always thinking about the next thing we have to do, or worrying about the bills or your pain, that we are rarely present and paying attention to what we’re doing now. Mindfulness slows you down, opens you up to all those small moments throughout the day when joy and beauty is right there, previously unnoticed.
A creative outlet
I’ve been interested in photography since I was a child. After that big flare 10 years ago, I got serious about it and bought my first digital camera. For me, photography is a conduit for mindfulness and beauty, as I travel around my neighborhood with my camera.
Finding a way to release your creativity helps you slow down (yes, that again), and focus on something beautiful and fun. It doesn’t matter what you do — woodworking, knitting, sewing, writing, gardening, music — and it certainly doesn’t matter how good you are. What matters is connecting to that creative urge and finding a release for this side of you.
A partnership with my body
Most of my life, I have separated who I am from my body, which so often was a source of pain. During a period of particularly high pain levels, I tried something new. I opened up and listened to what my body was telling me — actually had a conversation with it. In the process, I discovered how hard it was working for me and how much it needed me to collaborate with it. I changed my approach, becoming partners with my body, the two of us working together to get me through the day. Having spent some time working on gratitude and mindfulness helped me in this process.
These techniques are all about shifting the focus from the pain and illness to the rest of your life. They don’t change the fact that you have RA and chronic pain, but they can begin to change your experience of your pain and illness. In doing so, they help you connect to the fact that there is still joy to be found in life.
How do you connect to joy?
image credit: Lene Andersen
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s 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. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.