How to Cope With RA’s Unpredictability

Be honest with others and have a back-up plan (or two or three) so life doesn’t completely fall apart when flares hit.

by Lene Andersen, MSW Patient Advocate

I had plans today. And then I woke up with my rheumatoid arthritis (RA) in a snit, the pain and fatigue taking precedence over the notes in my calendar. Having lived with this condition for half a century, you’d think I’d be prepared to have my days sideswiped by now, but sometimes it’s still a struggle. How do you live when you can never predict how you will feel any given day—or even a few hours from now? After a (hopefully) brief tantrum, I return to my tried-and-true ways to cope with it. And that’s what I’ll share with you today.

RA is not unique in being a highly unpredictable condition—many types of chronic illness share a tendency to pick the worst times to act up, as an unwanted proof that our sense of being in control is an illusion. If you wake up with joints so stiff you can’t get out of bed, or you’re completely laid out with autoimmune-fueled fatigue, your best-laid plans don’t stand a chance. Have a busy day of tightly scheduled appointments? RA makes you zig when you need to zag. Important interview for your dream job? Guess who comes along. Reading a poem at your best friend’s wedding? RA says you can’t go. And in that last one, by you I mean me and it was devastating.

It doesn’t matter how much you intend to be reliable or keep a promise. When you are no longer in sole control of your participation and ability to meet expectations, the impact on your emotional health and your life can range from inconvenient to profound. Rescheduling an appointment feels uncomfortable and irritating, but gradually losing touch with friends because you had to cancel plans AGAIN is life-changing and breaks your heart.

Treatment can be your first step to reduce the wild mood swings of your inflammation, so talk to your doctor to make sure your meds are doing their job. But even after remission, some level of unpredictability may remain. Next up: adjusting the way you live your life. These are some of my go-tos:

Control what you can. When a big part of your life can crash down at any moment, you learn to control what you can. Try tracking how you feel. Identifying some of your symptoms triggers might help you avoid or reduce flares, and that can contribute to you feeling a lot less helpless. But finding a sense of control doesn’t have to be focused only on your RA. I find great comfort in organizing something. It used to be alphabetizing my CDs, and these days I’m doing a deep dive into the planner and journaling community, currently running my life with three different calendars. It’s very soothing.

Pro tip: Try to control only that which affects you directly. In my experience, friends and family get a little snippy when you try to control their lives.

Manage your stress. Being overwhelmed is a flare trigger for many, so it’s important to find ways to manage your stress. There are some excellent stress-management courses available online, meditation can help you feel more Zen, and implementing teamwork in the various aspects of your life—both home and work—means you have less of a load. For me, it’s essential to have a buffer zone that can soften the physical and emotional impact of the times I can’t be present. For instance, I schedule tasks across my week with space between each so I have time to recover and start writing my columns several days before the actual deadline so they won’t be late if I have a slow day.

Pro tip: When asked to estimate how long you will need to do a task, triple the number in your head. Maybe even quadruple.

Expect the unexpected. You may not be able to predict when your life will be turned upside down by RA, but one thing is certain: you know that it will. Incorporating that knowledge into how you arrange your life and responsibilities can help you roll with the punches. For me, that means having a plan B (and sometimes even C). I may wake up to the kind of day where I can’t do the big tasks on my infamous to-do list, but if I break that larger task into several much smaller ones, I may be able to finish one or two before I take a nap.

Pro tip: Sometimes, even the tiniest alternate plan is too much. In that case, scrap everything and give your body time to heal.

Be honest. Being upfront about how your RA affects your ability to be present can be the first step toward a somewhat easier life. People are generally considerate of each other’s needs when they know what they are. If your friends and family know that you’re cancelling going out to dinner because you don’t have the energy, you can pivot to takeout at your place. At work, you may be entitled to accommodations that can make the physical parts of your work easier, but if your boss doesn’t know that RA is kicking your patootie, they can’t help you.

Pro tip: Pretending you don’t need to move slower, do less, or find another way to complete a task takes an intense amount of physical and emotional energy. Being honest can be a relief.

Dealing with the unpredictability of chronic illness is no picnic and it’s normal to feel that if you didn’t have RA, everything would be fine. But life in general is unpredictable and you are not alone in feeling frustrated and out-of-control. Starting to have that conversation your family and friends may help you (and everyone else) feel less stressed out.

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.