A plastic cutout of a figure with two thumbs up. Hiding behind the figure is a shadow of the same man looking very disheveled. From behind the cut out is a speech bubble with a sobbing emoji.

The Self and RA

Recently, I’ve been taking the time to consider what it means to be someone with RA. This generally includes the following questions: What does it mean to have a chronic illness? And what are the ways in which my body — and anyone with a chronic illness’ body — is erased through societal discourse?

While these are questions I routinely think about, what really sparked my interest in these questions was an article from the Psyche newsletter entitled “Chronic pain forces a strange dance: performing wellness for others”, which I have made footnote down below. In this article, I want to talk about how I answer those questions. I’ll incorporate most of my response within the context of the Psyche article.

Invisble aspects of chronic illness are often invalidated

In the Psyche article, the author talks about how he feels he has to “perform wellness” for others. He describes this in a way that I think is relatable to all people with RA: “People take their cues from obvious signifiers: I didn’t use a wheelchair or walk with a stick, I didn’t wear a leg brace or limp, and my legs didn’t appear damaged: ergo, my pain must be manageable."1

Acknowledging visible aspects of chronic illness

Essentially, what he is trying to convey is that we, as a society, often only acknowledge the effects of chronic illnesses that are “visible,” so much to the point that those of us with “invisible” chronic illnesses — and RA can be one of those — routinely have our experiences with chronic pain invalidated.

I’ve seen this from my own personal experiences. I’m young (and hopefully look it), and I don’t normally wear gloves, braces, or any other supports for RA. Therefore, people assume I’m healthy and normal upon first meeting me, even when I’m not. And it’s not that everyone has to know that I’m chronically sick; it’s that that assumption that I am fine is dangerous because it erases my experience with RA.

Chronic illness as a full time job

One other quote that really stood out to me in this piece about chronic pain was:1

The most common experience of chronic pain is the inability to concentrate on what is immediately in front of you, on the task at hand, or on what people around you are saying. Your only yearning is that it should cease. The words of Winston Smith in George Orwell’s novel 1984 are apposite here: ‘Of pain you could wish only one thing: that it should stop … In the face of pain there are no heroes.’ The strange dance of performing the well body – enduring long dinners, plays and trips to the cinema while my legs screamed in protest; begging a walking companion to slow down for fear my legs would give way – became a full-time job.” (my emphasis)

Planning life around RA and vice versa

Here, the author characterizes managing chronic pain—and the sometimes awkward situations that arise from that illness—as “a full-time job”. This is a sentiment I’ve seen reflected in many community members’ articles on RheumatoidArthritis.net.

In addition, I have found in my own experience that I have to plan my real life around my RA life — and vice versa. The drugs that I take on a regular basis, the rescheduling of events when I feel too fatigued to attend them, the constant determining of when I can and cannot exercise, walk, go to the grocery store, or even buy a cup of coffee: this is a full-time job. Having RA is like having a full-time job.

Performing wellness with a chronic illness like RA

So: who am I? And how does RA color that? I’m someone who regularly has to perform wellness for others (to use the author’s terminology) in a society that doesn’t acknowledge my existence. I’m someone who is constructing a mosaic of my life. Having RA is a large shard of glass in that mosaic.

My ultimate purpose in writing this article is to convey an experience of RA that is usually erased in our society today: the existence and experience of chronic pain and illness and what it does to others’ perceptions and preconceived notions but also what it does to the self.

Link for Psyche article: Chronic pain forces a strange dance: performing wellness for others.

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