man tired from a long work day and longing to be with friends

Wait... How Old Are You?

When I tell people that I have RA, I get one of two responses: "Yeah, I have oint pain, too" or "Arthritis? At your age? No way..." The former is an increasingly frustrating response because it rests in some level of ignorance, as RA is more than joint pain; it's a destructive disease that can damage your heart, lungs, kidneys, and more.

However, it is the second response that is more infuriating to me than anything else, although I understand why people respond in that manner. I am only 22 and (hopefully) look like it. Nevertheless, I'd like to take some time today to talk about how my age intricately affects my experience with RA.

Age at RA diagnosis: 21 years old

My diagnosis came when I was 21. October 2018 was a turbulent month in my life between finishing my bachelor's degree, writing a thesis, and dealing with - at that time - unexplainable pain. Hearing the words of "You have rheumatoid arthritis" escape my rheumatologist’s mouth even before having anti-CCP and C-Reactive protein tests was alarming, and it has taken until now to fully unpack and understand what having RA means as a young person.

In denial about my diagnosis

For the first three months after the diagnosis, I tried to continue living my life as I normally would, trudging through my schoolwork, not really telling my professors about my problem, and hoping that this would just go away.

There were certainly layers of denial embedded in that mindsight of wishing RA would just go away; however, as the months have passed on like slow leaves falling to the ground, I realized that my RA was here to stay, that my daily and nightly experience, my whole entire life, would be colored by this disease. And I concomitantly recognized that my life had to change to accompany for this disease.

Adjusting to a different life

As someone who is just beginning their life, this is exceedingly difficult: by the end of the day, I have no energy to go out for drinks with my co-workers, to take on more tasks at work, to live a normal life. It makes me realize how different my life now is.

How I spend my time is different from my friends

When I hear my friends and coworkers talk about all the exciting and fun things they did over the weekend—such as kayaking, swimming, fishing, and hiking (remember that I do live in Florida)—I think about how most of my weekends are spent: recovering from the week, resting my joints, doing necessary household chores, and, if my energy allows, exploring some trails around Tallahassee.

It’s times like this when feelings of missing out on the vitality of my life creep in, which only culminates in the recognition that I have to let go of those parts of my life that I will no longer experience and embrace what I have, what is right in front of me.

Accepting the changes that RA will bring

I don’t want to. I don’t want to accept this disease; I don’t want to have this life; I only want to live a normal existence. But, now nine months after my diagnosis, I am only beginning to accept that my existence will never be normal.

Sometimes I feel like I have to sit down with myself throughout the day and remind myself that I do have this disease and that it profoundly affects my lived experience. That my story, that my life is very different now from those of my friends who are also young. That, above anything else, I have to listen and prioritize my body in order to live a fulfilling and enriching life. I think now I am looking to explicitly demarcate how my life will pan out with RA in it. And this is easier said than done.

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