Acceptance, Chaos, and RA
I’ve had a lot of time to think lately, mostly because I’m still in quarantine in my tiny apartment. From what I want to accomplish in my life to different goals and plans to redecorate my living room, I’ve been covering a lot of ground. The one biggest realization that I’ve had — and it’s not really a realization, it’s more of an acceptance — is that RA is here to stay.
And that’s made me really upset recently because it’s finally struck me that I’m going to have RA for the rest of my life. I’m 23 years old as I’m writing this in June 2020, and I was diagnosed with RA in October 2018. Only now am I grappling with the fact that RA is something that will follow me wherever I go and something that I, in turn, will carry with me throughout the rest of my life.
Accepting the longevity of RA
Writing that statement out is a form of acceptance. For the longest time, I prevented myself from saying that I would have RA forever because I didn’t want that to be true. I didn’t want to have RA and all of its comorbidities, its medications that I have to inject in myself, its doctor visits and bloodwork that are extremely expensive. Two years ago, when I was living in London and just preparing to come back to the States, I didn’t expect RA to be a part of my life. But I know now that it is here to stay.
Does acceptance mean defeat?
Something else that really prevented me from acknowledging the longevity of this condition was the belief that acceptance of RA meant defeat. That I was giving up my previous life for a life defined by pain, infections, bloodwork, and the askance glances of people who see me limp when I’m having a flare and think I’m just faking it. That somehow, I would never be able to go back to the way I was living before. That the parts of me that existed before RA and were defined by my not having RA would cease, would burst into flames. That I would never have access to those parts again.
Acceptance means prioritizing my needs
In reality, quite the opposite has been true — except for the askance glances. With RA, I actually have a better understanding of who I was before this disease waltzed its way into my life. I am more capable now of accessing the life I had lived before RA. Not that I can corporeally experience that life, just that I can mentally understand it, unfold it in front of me, and see how the dots were beginning to connect.
I can see how the life I was living before RA was not a sustainable one: I was not taking care of myself in the way that I should have been, I was not able to ask for help, I was unsure of what I wanted to do with my life. I didn’t even know who I was. But RA really zeroed in on those pieces that were missing by forcing me to prioritize what I needed in my life. And while I’m certainly not grateful for the pain and misery that can accompany having RA, I am thankful for the lessons it has taught me thus far.
Planning for the chaos of RA
We have a saying in my family that in order to live productively, you have to plan for chaos. I’m not sure if that’s more emblematic of my family structure or not, but what I can say is that being diagnosed with RA was unplanned chaos. Now that I’ve had the disease for a while, I better understand that chaos and can plan for it — but only in the way that human beings can actually have knowledge of the unknowable.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?