Made With RA: Having RA Means You Are Resilient

When a flare gets you down, you have to get back up. Lene Andersen reminds you that you already know how to keep going.

by Lene Andersen, MSW Patient Advocate

Rheumatoid arthritis (RA) can stop you in your tracks, taking over every single part of your life. Whether the first flare or the 557th, when RA wants center stage, there’s nothing you can do: for a while, this egomaniacal condition rules every minute of your day and affects every decision you make. Despite what’s happening within your body, you can’t sit out on everything waiting for a flare to pass. That’s not how life works. The bills still need to get paid, your family still needs you, and your employer prefers your presence at work. Somehow, you find a way to do it all (most of the time), digging deep within and showing up. When something as simple as getting out of bed to have a pee takes effort and grit, how do you keep from rolling up into the fetal position and giving up? This is what a lifetime of living with RA has taught me about how to be more resilient.

Remember You Have Choices

There are days (weeks, months) when it feels as if I have no option but to keep going and that lack of choice is almost as heavy as the weight of a bad RA flare. When you desperately need a break from the pain, from feeling sick all the time, from the efforts of every task and yet know that for the rest of your days this blasted disease will be your constant companion... well, taking that next step in your day can seem insurmountable.

On those days, I return to a beautiful quote by Michael J. Fox in an interview with Entertainment Weekly: “I don’t have a choice of whether or not I have Parkinson’s: I have it. But other than that, I have a thousand choices, and I can’t let myself be sunk by the weight of that one non-choice.” It reminds me that I do have choices and frees me from the feeling of being imprisoned in RA. When I decide to start the day with range-of-motion exercises in bed followed by a warm shower, I make a choice to help my body feel better. I make a choice to deliberately look for the beautiful and the funny and in so doing, I choose to infuse my life with positive feelings. And on really bad days, I make the choice to get out of bed to go to the washroom instead of soiling my bed. Yes, some days it’s as basic as that.

Switching my focus helps me lean into all the choices I have and all the ways I can put my own spin on what can objectively be a crappy situation. By remaining conscious of the fact that I choose to say, get out of bed, take the next step, pay the bills, laugh with a friend, I ensure that although RA affects my life and state of mind, it is not in complete control of them.

Remember RA Is Variable

I have a three-week tolerance for feeling awful. If I have a flare or an injury, I’m able to breathe through it for about 20 days, after which I completely lose my composure and feel as if I am stuck in this terrible place forever. Sometimes, it helps to have a short temper tantrum before you come back to figuring out how to cope.

Over my five decades with RA, I have learned that injuries and flares may simmer down on their own in a few weeks and if they don’t, my doctor has a bag of tricks she’d be happy to use on recalcitrant symptoms. But that’s just one expression of a much deeper truth. An old Persian saying that has been repeated in many cultures, including Judaism, is “this too shall pass.” Nothing in this world is permanent. Things change. Seasons change, people change, and RA changes. I grew up in a time before treatment for autoimmune arthritis, which gave the inflammation free range to do its thing. But even without treatment, my disease wasn’t a permanent bonfire—at times it abated. I’ve learned that RA ebbs and flows, just like the tide. Sometimes, it washes over you and it feels as if you’re drowning. At other times, it simmers in the background, leaving you free to focus elsewhere. Now that we have effective treatment, your doctor can help you get there sooner.

Remember Your Strength

Life is hard. RA may be one of the things that makes it hard, but it isn’t the only one. Financial problems, kid problems, divorce, losing loved ones, getting a college degree, living through a pandemic, learning how to bake good sourdough bread or play the violin… It’s all hard. And in each hard thing you do, there is another lesson about how to cope with a hardship. You learn perseverance, how to fix your mistakes, how to grieve, and how to move on. And you’re stronger each time you do.

And so it is with RA. Every time you get through a flare, realize you need to switch medications, successfully reduce your pain or find a way to navigate the healthcare system more efficiently, you get better at living with this condition. In the weirdest twist of all, RA itself teaches you the resilience needed to keep going with RA.

Adjusting and adapting happens continuously, but is often unnoticed in the moment. Taking some time to reflect on how you’ve changed over your time with RA and how your coping skills have improved is the first step to recognizing just how resilient you have become. Celebrate that as often and as loudly as you can.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has 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. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.