Being True to Yourself with Rheumatoid Arthritis
Photo credit: Sofia Kinachtchouk
Being true to yourself means to be yourself. To know who you are and act accordingly. That’s hard to do for anyone. When you have rheumatoid arthritis (RA), it can be even more of a challenge. What you are — a person with RA — contributes to who you are. How do you integrate the two?
Pretending I’m fine
When people ask how you are, do you always say “fine?” Do you hide the truth on bad days (even medium days)? Do you make sure no one sees you taking pills? Does anyone around you really know the impact of your RA?
That used to be me. Obviously, my wheelchair and the quite visible deformities make it impossible to pretend that I’m an Olympic athlete. Still, it’s amazing how much about RA you can hide if you’re dedicated to the cause.
I never told anyone how much help I needed to get through the day. Instead, I just appeared at school and my job looking put together and ready to work. If invited to stay overnight, I found an excuse not to go. My sense of independence neared the ridiculous and with the exception of my family, I hardly ever asked for help. I pretended that everything was just fine, that I was fine, and no, thank you, I didn’t need any help at all.
It was exhausting.
No more pretending
I didn’t realize how exhausting it was to pretend until I was recovering from my big flare 10 years ago. The flare had completely debilitated me and every bit of my strength was spent just getting through the day. And, it turned out, pretending takes energy. A lot of it. Energy I simply didn’t have. So I stopped pretending.
When people asked me how I was, I answered honestly. I didn’t treat strangers to a litany of every ache I had, but kept it appropriate to the situation. To most, I might say it was a rough day, or a pretty good day, or my left knee hurt like a… well, you get the picture. To those who were closer to me, I’d go into more detail if things were rough and I needed to talk.
I also started asking for help when I needed it — it was difficult at first, but I got better at it. When a friend’s visit ran too long, I lovingly threw them out while explaining I needed to rest. And I started calling my daily nap a Mandatory Rest Period to help others understand how essential it is to my well-being and ability to function.
As I became aware of how important this honesty was, I found ways of keeping myself accountable. I wrote about it in the early posts on my personal blog, committing to emotional honesty, both to others and to myself.
Yes, to myself, as well. Almost 40 years of pretending had created a deep habit. Not exactly of lying to myself, but of ignoring what my body was telling me. And that was the second factor in learning to be true to myself.
Listen to your body
Your body tells you what’s important. It sends messages about being thirsty, hungry, tired, in need of painkillers, and so on. The problem with having RA is that we get used to blocking out a lot of those messages, especially related to pain and the need for rest. If we didn’t, we’d be curled up in a ball sucking our thumbs half the day and who has time for that? Instead, you build a wall between yourself and your body and ignore it.
And that’s a really bad idea.
Ignoring my body is what has pushed me over the edge into flare after flare after flare. I didn’t hear the first time my body asked me to please stop, nor the second. By the third, I might hear faint murmuring and it was still asking nicely. I’d ignore it, it asked louder. Eventually, I’d say I needed just a few more days and then I’d rest. And then it called me nasty names and made me sit still. In other words, it flared.
I finally clued in and started listening. I closed my eyes, turned inward, then pulled down that wall between my head and my body so I could hear what it was saying. More than that, I began to treat my body as my partner, instead of my enemy. Because it is not my body’s fault that it cannot withstand the assault of RA.
Having a partner to help me build a better life has made a big difference. I’m not perfect at it — those 40 years of ignoring what my body would like are hard to counteract, but over time, I’m getting better. These days, my body hardly ever calls me nasty names.
Learning to be true to the part of me that has RA took a long time. I had to find out what it meant, had to get over the fear of the judgments of others. Had to start listening to myself and shed any residual judgments I had. And it was worth it. Being true to myself means living like a whole person, instead of a fragmented one. RA is part of that. Accepting it, integrating it into who I am and how I act, even embracing it, has freed me in ways I could have never imagined.
Are you true to yourself?
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.