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Protecting Your Health with RA

Last updated: 07-14-2020

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 Protecting Your Health with RA

It was my nap that taught me about boundaries and my role in maintaining them.

Years ago, my rheumatoid arthritis (RA) progressed to the point that I needed a daily rest to manage fatigue and pain. And that’s when I banged hard up against other people’s preconceptions.

“It must be wonderful to have a nap every day,” said many. “I wish I could indulge in a nap,” said others.

I’m sure I don’t need to mention that none of the speakers had a chronic illness?

My daily nap was not an indulgence. It was — and remain — a necessity. Because of it, my fatigue and pain levels are more manageable, which enables me to have a higher quality of life and to actually have one. A life, that is.

I very quickly got fed up with constantly having to explain this and renamed it, using a term that reflects why I need to sleep for an hour and a half in the late afternoon. It is not a nap. It’s my Mandatory Rest Period.

When people wanted to arrange a meeting, phone call, or activity around that time, I explained simply and factually that that was when I took my Mandatory Rest Period, an important (and immovable) part of managing fatigue and pain, and that we’d have to find another time.

The impact of my decision to use different terminology was immediate and very educational. Although some tried to push a bit against this boundary, most just accepted it and suggested a different time. More than that, those who tried to push me to change, very quickly adapted and accepted.

That, I realized, was not just because of the different wording. It was because I stuck to my boundary. I didn’t twist myself into a pretzel of apologetic explanations, I didn’t get hurt, I was just pleasantly and politely inflexible to change, protecting that boundary.

And the world didn’t end. None of my family disowned me, none of my friends disappeared, and I continued working and volunteering with a number of organizations.

This experience emphasized that my words and actions are an essential cue in guiding others to accept and respect my boundaries and my needs. Because — light bulb moment — if I don’t respect my boundaries, I show others they don’t have to, either.

For example: if I have told someone that my Mandatory Rest Period is sacred and I am not available, but I answer the phone or allow them to book a meeting (“just this one time”), I teach them that this boundary is not actually real. If I asked my partner to put dirty towels in the laundry, then continue to pick said towels off the floor while muttering invective, I play a role in his continued stomping on my boundaries.

In his defense, I should note that The Boy is very good at respecting my boundaries once I have told them where they are and I have never once picked up his towels.

And that’s another element to this thing about boundaries: you have to tell people where they are. We — and here I am mostly talking to women — are often taught to submerge our needs in favour of meeting those of others and makes it very hard to set a boundary, say it out loud, and stick to it.

But it’s important and although this can apply to any boundary set by anyone, it’s especially so for those of us who live with RA and other types of chronic illness. When you are constantly juggling pain, fatigue, and life, identifying what you need to do in order to continue to do that is an important step towards creating a better life. You may be able to survive without boundaries, but you can’t thrive.

You want to do that, right?

Think about what you need. Is it a nap, a particular type of diet, delegating household chores, or getting accommodations at work to make the job easier for your body? Figure out what you need, then say it to yourself and out loud, and then protect that boundary like your life depended on it.

Because it does.

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