It's OK to Be Honest About Your RA
Smiling through the pain might make small talk with others easier, but no one’s giving out Oscars for denying your truth.by Lene Andersen, MSW Patient Advocate
I used to pretend that I was fine with a capital F. Minimizing the amount of pain I was in because of my rheumatoid arthritis (RA), pretending I didn’t need help. I pushed to do as much as possible on my own, often ending up in a world of hurt because of it. Basically, I spent a lot of time and energy trying to persuade others that despite my visible deformities and the power wheelchair, I was perfectly healthy and able-bodied.
In retrospect, I probably wasn’t fooling anyone but myself.
And then my RA flared out of control, consuming everything in its path—energy, mental focus, my ability to do anything. It was devastating. After about a year of living in the abyss, I started taking biologic medication and gradually got my life back. For a long time, I didn’t have enough energy to do more than just get through the day, which meant I simply didn’t have the physical capacity to fake it for anyone else. Discovering that pretending takes a lot of energy made me think it was time to change my approach: When I finally started to get a bit more in my energy reserve, I vowed to never pretend again.
There’s a very fine line between putting a smile on your face to get through the day—online and IRL—and denying your truth, even to yourself. The more you pretend, the more you begin to believe that who you are without the mask doesn’t have the same worth, creating a dual existence. But instead of being Clark Kent and Superman, you are Secret Sick Girl and Superwoman. So how do you live authentically when your reality is chronic illness?
For me, getting there was a process—is a process—ever evolving and ongoing, but one to which I’m committed. I am better now, better at facing facts when my body says it’s done. Better at telling the truth about what I need to manage my pain and fatigue (a daily nap, for instance). Better at seeing myself through the grief that comes with being an open and honest person who lives with chronic illness and disability (because if I show the truth to others, I have to face how hard my life sometimes is, too). Because guess what? I also discovered that when I stopped pretending, I felt like a whole and much happier person. Then I was able to make some changes to help me put myself back together again.
I Started to Listen to My Body
If we paid attention every time our body ached, felt queasy, or asked for a rest, we’d never get anything done. So you build a wall between yourself and your body. But before you know it, the bricks get so high that you might start feeling oddly separated from yourself.
Being authentic starts with being aware of what’s going on in your body. Find a comfortable place to sit or lie down, close your eyes, and open up your mind and heart. When I first tried this exercise, I actually asked my body how it was feeling. It was the beginning of a much better dialogue between my mental and physical selves. These days, both my mind and my body get a vote. Sometimes, I still need to get on with things, but since I keep my promise to rest afterward, it works.
I Started to Love Myself
When you get diagnosed with RA, it’s normal to struggle with self-esteem and on some weird level feel like damaged goods. How could you not, with the quest for perfection presented to you everywhere from magazines to on social media?
The next time you’re in front of your bathroom mirror, take a good long look at yourself. And then, do some self-talk. Tell yourself (out loud) that you’re good enough, just the way you are. That your chronic illness has made you stronger and more resilient. That you kicked butt on a presentation at work. That you managed to get the grocery shopping done during rush hour. Or that you’re even managing just to cope with pain. You get the idea. It might feel silly in the beginning—and very Stuart Smalley of SNL fame—but it’s a very good way to start building your self-worth again.
I Now Try to Be Myself On the Gram and Off
One of the great things about having invisible RA is that you can “pass” for healthy. But it can also feel really lonely when others can’t tell if you’re feeling awful and need support. Social media doesn’t help. You know the pretty pictures that others with RA post on Instagram are selected to tell a specific story, but your heart still looks with longing at those perfect moments other people with your disease are having.
Being open about your illness and your limitation is wonderfully liberating. When I started being open about needing a daily nap, it was empowering and set the tone for how others should react. Once I respected my needs, treating the nap as just another part of my life, it stopped being a big deal. Most of the time, people respect it.
The next time you feel tempted to keep up with the social-media Joneses, selecting only the pretty and acceptable truth, take a deep breath and think about it. Remember that no one is perfect, we all live with the messy, the desperate, and the longing. There’s a lot of talk about authenticity, but is it really real if it’s carefully curated? Maybe if we all dared to show more of our actual lives, we’d be a lot happier.
I Share My Imperfect Moments and Others Appreciate It
As you start being honest and unapologetic with yourself, follow through. Show others that you respect the needs of your body and are willing to do what you can to honor them, to feel better.
Instead of wrecking yourself going out with friends, invite them over for a movie night (in PJs). Be generous with yourself, allowing for twice the time—or more—to complete a task, allowing for the inevitable flares, delays, and snafus. If the house is messy, but you’re exhausted, take a nap and then post a photo of the inevitable bed head, proudly proclaiming that you put yourself first.
Being honest about your RA life has a wonderful ripple effect. Accepting who you are and what you need expands into other areas of your life, as well. It can help you be more honest in relationships, making them healthier. You might find yourself saying no to bullying or inappropriate behavior. Maybe you will ask for a raise or promotion, and the accommodations for your RA that will help you work better. Loving your authentic self may just change your life.