Things That Fall Apart Can Be Sutured Back Together

The body is the site of untold stories. As a 21-year-old college senior who has only recently been diagnosed with RA, I am struggling to flesh and shake out the story of my body, to tell the story of how I arrived at this disadvantageous position in what is supposed to be the prime of my life.

I venture to say that that story begins in May 2018.

During this time, I began having unexplained joint pain in my left hip and both hands and feet. At this stage, the beginning of most mornings was not too cumbersome. Some stiffness and some pain, but nothing alarming. Towards the middle of May, however, I experienced what I retroactively realized was my first flare. I remember waking up in the middle of night with the feeling that my hip was on fire, a searing sort of pain that scared me into a doctor’s appointment. Because I was not having classic signs of RA (yet), no blood tests were conducted, and I was sent home with orders to rest and ice. After three days, the pain went away, and I thought all was normal. Despite having two more similar flares for the month of May, I paid no attention to the pain: I was preparing to study abroad in London the next month, and the prospect of travel occluded my condition at the time.

In London, life was beautiful. The air was clear and medicinal, inebriating me with a sense of adventure and wonder at this peculiar thing called life. Walking around SoHo, Trafalagr Square, and Tavistok Square (one of the places Virginia Woolf lived, and as a literature major, a frequent pilgrimage site), visiting the Caffe Nero on Tottenham Court Road, the Foyles Charing Cross Bookstore, the Blackfriar Bridge, life had meaning. I would not be stopped by the little amount of pain I felt during this month. While my feet were occasionally swollen, while my hands were frequently red, and my wrists wrapped in braces, I felt as if the world was at my feet, displayed in front of me, as Sylvia Plath says, like a “ripe, juicy watermelon.”

July, August, and September all bled into each other.

If I must confess, I do not really remember much from these months. More frequently, mornings began with a limp. I relied more and more on my wrist braces that I had previously used for carpal tunnel. Eventually, however, I returned back to college, only to find that, one searing September morning, I could no longer close my hands on my comforter in the mornings. I quickly rang my doctor and requested an appointment. The morning of the appointment, I was walking down the stairs of my apartment, one at a time, and limping towards my car. I stopped halfway and looked up, watching the grey puffy clouds barreling across the hidden sky. In those clouds, I saw pain and desperation. “There is something wrong with me,” I thought to myself.

The results from the numerous blood tests conducted that day confirmed my suspicions: my rheumatoid arthritis factor was very high, prompting a referral to the rheumatologist. Then, in October, came another round of blood tests and x-rays. All of the evidence was there: I was officially diagnosed and put on medication for RA. Immediately after the diagnosis, however, my whole life came to a screeching halt. My plans for the future had to be rearranged; my dreams of graduate school had to be pushed back so that I could have time to figure out a treatment plan; and, most importantly, I needed time to sort myself out.

The diagnosis had happened so quickly that I really had no time to process it.

Now, I am in a place to figure it and myself out. I find myself, now, existing in the mental liminal spaces between wanting a healthy, non-diseased body and realizing that that will never occur. While this realization can be depressing, and often intimidating, I am currently processing my diagnosis and training my body to respond. Writing consists of more and more breaks, hampering my productivity. Daily tasks are more cumbersome and require more energy. Some days are better than others. Some are, assuredly, worse than others. And on those worse days, I think about how different I now am from the people around me. How I have had to change to continue to function as a successful person. How some people will never understand what I, and many others with RA, experience on a diurnal basis.

During those days where the world seems so full of hate and any shred of purpose is missing, I think about my travels in London, how a diseased body experienced the surrounding world and experienced beauty despite the pain. I constantly remind myself that there is a purpose to this, that RA has given me fuel for the fire in me that desires to write myself and my condition into existence. Through this, I am constantly learning where I fit into this world. Although only a recent diagnosis, RA has taught me the limits of my body and how this diseased body functions within normative systems. In essence, I am constantly trying to write my story and the story of my body.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • Amanda Kohl
    2 months ago

    Hi David! I am sorry to hear that you have recently joined our RA family, yet I’m inspired by your outlook and determination to turn it into something meaningful in your life. I was diagnosed 5 years ago at the age of 46. RA came 1 year after I was coming to terms with and adjusting to the changes brought on me by a battle with Endometrial cancer. My 1st true flare was extensive and caused permanent damage to my right hand, ending a 25+ year nursing career. I initially struggled but searched for purpose and meaning to these diagnoses and the changes they brought to my body and spirit! What I discovered was that it forced me to slow down and see the beauty and deeper appreciation of the world around me. I found more joy in spending time with my family and close friends. I rediscovered an art that I was gifted with, but never had enough time to dedicate to, along with the joy of discovering that my son and I found ways to collaborate his talent with mine! I am still working on the courage to take it to the next level with the encouragement of my “tribe”. My 1st grandchild was born during this time of transition and I realized that I was blessed with uninterrupted time to spend watching her grow and seeing the wonder of the world through her eyes! I never would’ve found these realizations if I’d continued to hurry through my busy former life. I try to look for all the blessings and opportunities that have been handed to me because of this life with RA, especially during the struggles and difficulties that also accompany it. Your article has reminded me to continue to look for the positive in our lives that come with this diagnosis. Thank you for your positive outlook and beautiful words describing your newfound journey!!!

  • Richard Faust moderator
    2 months ago

    Hi davidadvent1. So sorry to hear about the diagnosis, but it is good that you have sought out a community where you can get information and support. It is completely understandable that, as things unfold surrounding the diagnosis and the impact, you have a level of fear and confusion. The good news is that treatments have advanced quite a bit in recent years and that a full, productive, and happy life is absolutely possible. One of our contributors, who was diagnosed at two and has had RA for almost 40 years, wrote about the evolution of treatments noting “What is powerful to me about recounting this progression of treatments is understanding how far we have come in developments and options. Sure, no treatment is perfect nor one size fits all. But we have a few tools to fight RA:” https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/.

    One of our other contributors wrote a ten part series on things she would tell her newly diagnosed self (I recommend all of them). The first one is on getting the diagnosis: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/. She notes “That an RA diagnosis is not the end of the world. It’s an opportunity to make things better.”

    You mention life changes, including pushing back dreams of grad school. There absolutely will be changes, but pursuing your dreams and living the life you want is absolutely possible. In this article our contributor Michael writes about getting into his dream school for a Ph. D. program: https://rheumatoidarthritis.net/living/strength-and-resilience/.

    I don’t want to sugarcoat things. Life with RA can be hard at times, but it can also still be filled with joy and accomplishments. Know that this community is here. Best, Richard (RheumatoidArthritis.net Team)

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