How to Talk About Life With RA
Why the words we use to describe our life with chronic illness matterby Lene Andersen, MSW Patient Advocate
“Do you suffer from rheumatoid arthritis?” This was the lead-in question on a survey and the very reason I immediately clicked away, bouncing off to another website. Because no, I don’t suffer from RA. By saying that, I don’t mean to say that I’ve been faking my lived-experience cred as a chronic-illness writer and advocate. I’m talking about what my identity is—or rather isn’t. Being an RA “sufferer” is simply not part of who I am.
Don’t get me wrong. Having RA is no picnic and there are times when, consumed by the intense pain of a mega-flare, I have objectively (and subjectively) been in a place of suffering. Thanks to some pretty decent medication, this is no longer part of my every day. But even on really bad days—and even with the meds, there can be many bad days with RA—the mental game called coping is essential in stopping the pain, fatigue, and endless challenges from taking over.
Dealing with RA takes a toolbox containing an ever-evolving collection of tips and tricks. Some of these are actual physical items, such as medication, heating pads, splints, and more, but most are the skills and resources you develop over time. One is the almost supernatural ability to constantly monitor your body for symptoms and signs that may warrant additional medication, a call to your doctor, or slowing your pace. Others include the workarounds you use for brain fog, fighting back against depression, or wrestling with your insurance company.
You get my point.
And then there is your identity—who you are, how you define yourself, how you introduce yourself to the world. Maintaining an identity that isn’t only about being chronically ill can be a vital aspect of coping well. By no means should you pretend your illness doesn’t exist (RA will quickly teach you this is impossible), but nor does it have to take over your entire existence. And it begins with the language you use.
Words have power. The language you use in describing chronic illness shapes your perception of what it’s like to live with it, who you become when you have RA, and how you can cope. When looking up the word suffer on dictionary.com, one of the definitions states “to endure pain, disability, death, etc., patiently or willingly.” And sure, I do live with pain and disability, but there ain’t no passive patience or submissive willingness involved. Living with RA means fighting back every day against pain, fatigue, side effects, and the urge to curl up in a ball. Every day, you fight to hold onto your ability, your stamina, and your mental health. It is an incredibly active existence, the complete antithesis of suffering, often within a metaphorical box that from the outside looks like something very close to suffering.
That outside view is a big factor in determining what our identity is supposed to look like. We live within a society that values health to the point of worship, judging disability and chronic illness as sad and victimizing. This message is pervasive to the point of allowing almost nothing else, leaving no room for individuality. I encounter it every day, in the surprise that I live on my own, and the awe that I function with chronic pain, and in the confusion when I push back against the stereotype. Once, at a farmers’ market, a vendor suggested that I should meet her aunt, who also had RA, so we could—and I quote—“talk about your hardships.” When I replied that although I’d had difficult experiences, I didn’t see them as hardships, her reaction was a bewildered silence.
This kind of healthy and able-bodied perspective is supremely reductionist, limiting everything you are and everything you do to a label. You’re sick. You’re disabled. You’re a victim of a disease. You’re oh-so-inspiring because you left the house or managed to have a laugh with a friend, despite the horrible suffering they think you must endure. Although I enjoy meeting other people who live with RA and chronic pain, love hearing their stories and discuss our commonalities, there is far more to me, the vendor’s aunt, and you than chronic illness.
Coping effectively with everything RA throws at you is an ongoing process. Being able to bounce (or limp) back to life after every flare and setback is the definition of a resilience that is built precisely because you have something to which you can return, something for which you are fighting. That something is your life and everything you love and that gives you hope—your kids, work or a passionate hobby, friends, family, pets, nature, hope, chocolate ice cream, and you. The you at the core of it all. Facing forward toward your future is what gets you through the repeated trips into darkness and pain and those connections that pull you back into the light tend to be related to something other than RA. You’re a parent, writer, amateur baker of sourdough, an excellent friend, cat- or dog-person, chocolate lover, and so much more.
Chronic illness, on the other hand, is something we have, not something we are. It is with us always, a cantankerous constant companion and need to be accommodated as such. But for me, that is as much room as I will allow it to have. The rest of my focus is on everything else that makes up my life.
And that’s why I say that I have RA, but RA doesn’t have me.