How Breaking the Rules Helps My RA

Going against conventional thinking (breakfast for dinner anyone?) is key in happier living with RA.

by Lene Andersen, MSW Patient Advocate

I had cereal for dinner. Again. While crunching my way through a bowl of cornflakes dotted with plump raisins and slices of banana, I felt both content—it’d been a painful day and the flavors were like a hug for my tastebuds—and vaguely guilty. Dinner time is for proper meals, hot ones with protein and greens my mind opined with a sniff. At that moment, no “proper meal” could make me happier than this bowl of breakfast food that took no time and energy to prepare. I began thinking about the rules we follow every day—could breaking them make life with chronic illness easier?

This is not about the kind of rules that are written down in law. There are good reasons you should wear a seatbelt, care for your children, and pay your rent or mortgage on time. And I do have some non-negotiable rules for managing my RA: I always take my meds, write in my gratitude journal daily, and my mandatory afternoon rest period (aka nap) is sacred. But every day we also follow hundreds of unspoken rules, many of which can make life very difficult when you have rheumatoid arthritis (RA) or any other type of chronic health condition.

These days, much of the Western world eats cereal and breads for breakfast, saving larger and hot meals for dinner, at a time you might be too exhausted to actually make such a meal. We feel guilty if the bed isn’t made every day and grungy if we skip our morning shower, but why? No one but you sees your bedroom, and the only person that’s offended by one missed shower is, well, you. So it might make sense to leave the bed alone and shower every other day in favor of saving your spoons for more important tasks later in the day. Chronic illness or not, weighing life’s expectations of us is about give-and-take. Of course, these rules aren’t limited to your daily life-management tasks; they affect every part of what we do. We’re “supposed to” build our careers as high as possible (exhausting), own a house (so much work), get married and have children (not for everyone), and those are just the obvious ones.

It’s easy to suggest that you should break the rules that don’t work for you, but getting to the nitty-gritty can be a bit tricky. Start with identifying your “energy sucks.” Ask yourself where you spend a lot of time, what leaves you feeling drained, and what do you frequently avoid or procrastinate? If the instinctive voice in your head immediately says “but I have to…” that’s a sign that it might be a rule you shouldn’t follow.

Here are some rules you might want break:

Rule #1: Stick to traditional family roles. Despite changing times, there is still that weird rule about women doing most of the housework and I think it’s time to stop that. Share the chores equally at home—after all, vacuuming, walking the dog, and cleaning the bathroom are straight forward enough for even kids to help out. While you’re at it, take care of your skin by showering only three times a week and have that nap you’re craving.

Rule #2: Homeownership is the pinnacle of adulthood. Why not mess even more with our cultural myths by making more profound changes? If upkeep on your house is difficult or stairs are a challenge, rent an apartment in a building with elevators where the superintendent is responsible for maintaining the property and repairing what’s broken. Instead of being a waste of money—as the myth proclaims—renting can actually increase your cash flow or give you the financial ceiling to change your job to one that’s easier on your body, but may pay less.

Rule #3: Never pay others for what you can do yourself. Here’s another myth: Hiring someone to help is an unnecessary luxury. Delegating means you have more time and energy to do other things and if you have the funds, paying someone to do the physical work that can be so hard on your body is a no-brainer. Imagine how much better you’d feel if you weren’t worn down. If you don’t have the money to hire the help you need, consider the barter approach. For instance, you might have a neighbor who’s a whiz at washing windows but is looking for help with their taxes. We all have different skills and yours might be just the thing that can help someone else out of a jam, while they are doing the same for you.

Rule #4: Never show your illness. RA affects every aspect of your life, but somehow we are programmed to soldier on with a stiff upper lip as if nothing’s happened. That’s bonkers. So take your medication in front of others (I’ve done that for years), tell people about what it’s like to have RA, and talk about needing a nap. Taking care of yourself isn’t weak. In fact, prioritizing your health is one of the strongest things you can do and the chronic-illness ways of doing that are no different than your healthy friends going to the gym.

Rule #5: Never break commitments. Cancelling on events with friends and family because you’re flaring feels awful, both because of guilt and FOMO. It’s also not limited to having chronic illness—parents of small children do it all the time when they can’t get a babysitter. So mess with the plans. If you’re exhausted by dinnertime, do lunch. If you’re hurting too much to leave the house, suggest take-out at your place instead or, on days when your RA is really active, do a virtual visit. After all, we’re experts at using Zoom now.

Rule #6 What others think is important. Most people will respect your choices as you begin to break the rules and perhaps even join you. For those who don’t, practice a few snappy rejoinders so you can get out of such situations without taking an emotional hit. Try “having a housecleaner means I’m able to spend more time with my kids” or “now that I’m renting, I can afford the trip to Rome I’ve dreamt about since I was in high school” (post-pandemic, naturally). Reminding yourself that the changes you’re making are not taking away from your life, but rather adding value can be an important building block in learning not to care about the opinions of others.

Here’s the biggest takeaway: There is no normal. So why not live your life in a way that helps you be happier and less tired? If making your bed in the morning (say) puts a smile on your face, do it. But if it doesn’t, just close the door to your bedroom when company’s over.

As for me, I’m buying more cornflakes.

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.