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The Rheumatoid Arthritis Juggling Act

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The Rheumatoid Arthritis Juggling Act

By Stephanie Aleite
Life

The Rheumatoid Arthritis Juggling Act

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I’ve always been the type of girl who likes to be busy. I used to be busy with Legos and cookie jars. Now that I am grown up, I am busy with internships, consulting work, and homework. Not to mention my “wifely” duties, which most often include making sure we both have clean underwear and something other than cookies in the fridge. All in all, I wear the hats of a wife, a student, a research assistant, a writer, a volunteer worker, a tutor, and a professional rheumatoid arthritis (RA) patient. Yep, I think that’s all. I’m guessing this is why it happens so often that I get asked by strangers, friends, and acquaintances: “Stephanie, how do you do it all?” It’s not that I don’t appreciate the admiration, but honestly, most of the time I feel like explaining that doing it “all” comes with a hefty price.

Instead, I usually laugh and reply, “I don’t do it all! Well… at least not all at the same time.” I mean, my husband knows what take-out is!

A lot of my closest friends and family say I’m a glutton for punishment. Meaning that I am almost incapable of slowing down, regardless of the consequences to my physical health. For example, at the end of every school semester, I would always gripe and moan about how exhausting (and painful) the last semester was and promise anyone within earshot that next term I would take it easy. Then, a few days would pass and I would sign up to nanny my friend’s brand new baby, redecorate the apartment, register for four college classes, and help another friend write her book. (Yes, that actually happened… I know I’m crazy.) Next thing I knew, this level of activity would leave me sitting up in bed all night, crying in agony and icing my swollen knees. My mom has even said to me a few times, “Did you forget you have RA?!” But that’s just the kind of girl I am! Ready to jump in any project with ol’ arthritis in tow.

“Someone once told me that RA is like a friend who will be by your side for the rest of your life and how I treat that friend determines how that friend treats me. So, I’ve learned I have to care for it, respect it, and–occasionally–entertain it.”

Now, if you’re like me, fun, active, and very stubborn (and with a little RA on the side), then lucky for you, I’ve done the hard work already and perhaps you can learn from my experience.

Over the years and due to my worsening RA, I’ve discovered that it’s better to work smart, not hard (go figure). Keeping my health my number one priority allows me the opportunity to focus on what matters and the ability to take on projects I’m most passionate about.

Someone once told me that RA is like a friend who will be by your side for the rest of your life and how I treat that friend determines how that friend treats me. So, I’ve learned I have to care for it, respect it, and—occasionally—entertain it.

I’d like to share a few insights and tips that I’ve picked up along my RA journey, in hopes that they might help you find the right balance, too!

1. You may think no one feels your RA pain except you, but the person sleeping next you comes pretty darn close…

It could be your roommate, your partner, or even your pet cat. Whoever they are, they are feeling it. Especially in the morning when they’re getting up to go to work at 7am and you’ve been bleating in their ear all night. Do it for them, do it for Mr. Whiskers, or do it for yourself—doesn’t matter who. Just do everyone in your room a solid and STOP wearing yourself out to the point of sleepless, agony-filled nights.

Now, if you’re experiencing a flare-up of your RA, go right ahead and cry and keep your partner up all night with the sound of Netflix in the background. But honestly, why would you knowingly bring on a “demon-like” RA flare-up just so you can babysit for your friend/neighbor?

In fact, it wasn’t until I came to the realization of just how much my husband loves me that I began to make my health a priority. I still have “wife guilt” every now and then, but the way I see it, making my health a priority means making his feelings a priority. Our marriage has improved because he’s no longer stressed out wondering about what state he’s going to find me in when he gets home. I save up my energy for when he comes home, even if that means staying in bed all day or not cooking dinner, so that he doesn’t have to see me suffering. And when there are RA flare-ups, it’s easier to deal with them together knowing I didn’t intentionally or unintentionally bring it on. If you aren’t married, there are many other people in your life who feel the exact same way—be it your parents, a close friend, or even a colleague. The point is, even if you think you’ve perfected your “I’m fine” face, the people you have relationships with can tell when it’s just a mask.

Which brings me to my next point…

2. Do you really need to travel three hours in a car for your nephew’s, cousin’s, or neighbor’s bar mitzvah?

Honestly and openly explain your situation, and I bet they’ll forgive you.

The point here is, prioritize and save up energyor “spoons” as the chronic health community calls themfor those very special occasions that you don’t want to miss. I’m not condemning anyone who goes to an event or volunteers for something knowing it will put them in an RA flare. Truth be told, we’ve all done it! But it doesn’t need to be every time. Otherwise, the next thing you know, others around you will forget you have limited energy. It’s like when my dad calls me to tell me he’s surprising me with scuba diving lessons. As much as I love the ocean, swimming in rough waters is hard enough even for people without arthritis! Clearly, he’s falling for my Meryl Streep-like “I’m fine” performance. I’m not saying I won’t do it, but when I do, it will be for my birthday and I will definitely save up my “spoons” for at least a week!

And with that said…

3. Don’t let “friends” make you feel guilty.

Friends don’t give friends guilt trips.

If a close friend makes you feel guilty about anything, you should address it with them nicely and explain how it makes you feel. But if a “friend” or acquaintance makes you feel guilty about skipping an event or not volunteering to help with something, you need to pull out your “I have RA” card and remember what I said in #1 above: Mr. Whiskers needs his beauty sleep and crying in his ear all night puts him in a catty mood the next day. Some events just aren’t worth the hassle.

4. If you’re truly struggling to keep up and find balance, talk to a professional.

Whether it’s your rheumatologist, a life coach, or someone else, sometimes it’s just helpful to hear a third-party perspective. Let them know all the things you are juggling in your life, and ask for their advice on how to prioritizeor better yet, on how to tell loved ones why it is more difficult for you to juggle too many things. Perhaps they can even refer you to another person with RA who can give you some perspective.

What I’ve gathered from my experience with RA is that my health needs to be my number one priority. Sure, I’d love to make it to every event/activity to support my loved ones, but doing so may jeopardize my health. Being open and honest about my RA has helped those around me understand that I may not have the energy to “do it all.”

I encourage you to have open conversations about your RA with those around you. Doing so will help others understand if you have to miss out on things rather than attempting more than our RA will allow.

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