I’m a winter-person. I’ve always loved chilly weather and wild, rainy storms. Even after my rheumatoid arthritis (RA) diagnosis 30 years ago, when I lived in cold, dark, wet Northern Germany, I loved the winter weather. My joints didn’t care whether it was sunny or sleeting – they flared either way.
These days, I live in Northern California and I still have RA. Winters are short here, but now, when the barometer changes abruptly and the sweet, much-needed rain falls, my joints hurt more than usual. I love living in Northern California anyway.
But there’s another sort of rainy-season, one that can be much harder to cope with at times. It’s the one that sometimes comes when my RA symptoms worsen. This dark season exists only in my mind. My mental barometer shifts, it gets dark and dreary, and the soul-rain falls. And falls …
… and falls. It feels like it will never end.
When the soul-rain comes, I struggle more with my RA, resenting each joint twinge or throb, each bout of no-reason-for-it fatigue and malaise. My old, die-hard optimism fades as my mood plummets. Why me? I wonder. Why did I get this stupid disease? What did I do to deserve this?
And finally, how long will this last? Can I live with this forever?
It’s a fact: coping with an invisible disease like RA ain’t for sissies. It’s hard. It forces us to live with its often-invisible symptoms nearly every day of our lives, whether we like it or not. We might have stiff, aching joints, and feel fatigued, exhausted, or ill, but we still somehow get up each morning and go off to work or proceed to whatever we need to do each day. RA doesn’t pay the rent, buy the groceries, or keep the house tidy. That’s up to us no matter how rotten we feel. And because we may not be comfortable talking about how we feel to our employers or to others, we often bear our frequent pain alone, in stoic silence, and without their knowledge or support.
So really, it’s no surprise when the soul-rain drenches us. We can’t control it any more than we can stormy weather.
But like the weather, soul-rain storms always clear up, too. For me, sometimes it’s in a matter of hours, but other times it can take days or even weeks. Eventually, though, the storm passes, even if the cause—my RA—doesn’t, I just tell myself tomorrow will be better. If it’s not, then maybe the next tomorrow will be, or the next and so on.
I don’t blame myself for an occasional rainy-day-of-the-mind, but I don’t just sit around just waiting for them to lift, either. I use several tried-and-true tools to make enduring the soul-rain—and the pain—easier. Sometimes, these tools can even encourage the storm clouds to move along, so…
… Move yourself. If you’re able, step outside a few times a day and take a brisk walk. It doesn’t have to be a long one. But just the act of changing your surroundings, moving your body, breathing deeply, and taking in the sights and sounds around you can help lift your spirits. Notice the flowers, the trees, the changing colors of the season, the birds. Greet anyone you pass with a smile, and while we’re talking about that …
… Smile. Sure, I know. It’s tough to do when you’re feeling down but do it anyway. Turn up the corners of your mouth. Go to a mirror and practice smiling. Seek out others who smile a lot and smile with them. Watch a funny movie, or read a funny book or website and laugh out loud. I know it sounds nuts, but there’s real science behind this advice: studies have shown that when the muscles of your face curve your lips into a smile, your brain releases chemicals that help, physiologically, to lift your mood. So, do it! Smile—even if it makes you laugh—and then …
… Distract yourself. When we hurt, it’s easy to fall into deep puddles of despair. The best way I’ve found to wallow out of them is to distract myself. There are lots of ways you can do this: read a good book; listen to your favorite music with your full attention; watch an absorbing movie or TV series; bake some cookies; fix something that needs fixing; spend time on a favorite hobby; or try a new one. Anything that takes your mind off your pain and discomfort will work!
… Unclutter your head. The easiest way to do this that I’ve found is to allow myself to simply sit still and be present, right here, right now, and not lost, wandering and alone, in some frightening future, near or far. After all, there is only now. The past is over. The future is unknown and uncontrollable. So, for a minute, or five, or more if you can, first recognize your pain. Note carefully where it is and how it feels. Accept the fact of it. Then move your attention elsewhere: to your heartbeat, to your breathing, to how your hair feels as it grows. If your pain or some other thought or worry comes to mind, notice it, then gently push it back into the ether. Bring yourself back to the present. Focus on the air flowing over your skin. If your tongue is clamped to the roof of your mouth, relax it. Breathe. Be. The simple trick here is to put your mind at ease and notice the small gifts the world has to offer. Once you’ve mastered these small practices, repeat them whenever you get a chance, and you might notice a break in your mental storm clouds—and the glimmer of hope that comes with it. Again, this is something I found that works for me!
… Reach out to others. In my decades-long journey with RA, one of the most important things I’ve learned is that hiding my soggy mood from my family and friends for more than a day or two just serves to double or even triple-down on my misery. Not only do I resent the pain and other symptoms my RA is doling out, but I resent that the people closest to me haven’t even noticed the raincloud that’s following me around. Now I’m really in the doldrums. Don’t they even care? Of course, they do. But they have their own problems, worries, and lives. Like it or not, none of us are telepathic, so it’s unfair for me to expect my family and friends to be tuned into me all the time. But how do I tell them how bad I feel? Won’t they think less of me? That I’m just being whiny? Here, again, the best way forward is the shortest way. “My RA is making me feel sorta low,” I say. “I get so frustrated and hopeless sometimes! I could really use a hug/a listening ear/a pep-talk/all of the above.” Talking it out means airing it out. People who don’t live with this disease 24/7 can have some surprisingly promising ideas on new ways to deal with it. Or, if nothing else, they might offer to keep you company as you take a walk, watch a movie, or prepare a meal. Another thing that can help? Listening to their problems in return. Everyone needs a sympathetic ear now and then and hearing you are not the only one with bad days helps.
… And a couple more: If you’ll share this post with others in your life or online, it might help improve their general understanding of invisible illnesses—RA included—and about the importance of emotional self-care. And you can check out the Joint Decisions Facebook page at https://www.facebook.com/JointDecisionsRA for more information and resources about living with RA.
Used alone or together, these tools work for me when my RA and my emotions combine into the soul-rain. I hope they’ll work for you as well. Finally, remember that your doctor can help, too. Talk to them about these things. There might be a new treatment for your RA you haven’t tried yet, or you can ask about other practices that might help lift your dark, dreary mood. Together with your doctor, you will find the best way out of the soul-rain and back into the sun.
Note: This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. Janssen compensated me for the time I spent collaborating on content for Joint Decisions, but all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.
I love this post and your wonderful imagery (both verbal and graphic). As we enter the fall and winter months (with less sunlight) these are great tips to keep in mind. The fall/winter seasons (which I love) can be hard for people and especially those of us with a chronic disease and really especially those of us whose symptoms are affected by the weather. Thanks for this great post.
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Wren, it took me a while, but this is exactly how I think of my RA flares today ~ they are a storm that comes through strong but will eventually moves on until another day. Such a wonderful post.
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Excellent advice as always Wren, and beautifully put. 🙂 I’m sure we can all relate to it.
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