Celebrating 15 years of Living with Arthritis

It’s hard for a first grader to conceptualize the idea of an enemy. Not a bully on the playground, or a mean teacher, but a real enemy. An enemy so fear instilling and paralyzing that it envelops your whole brain with negative thoughts, leaving little room for anything else. For me, that enemy was my body.

I don’t remember much about first grade, but I remember the pain. I remember waking up in the middle of the night to go to the bathroom, and not being able to walk because my feet were so stiff and swollen. I remember trying to write my name, but not being able to open my hand to grasp the pencil. I remember waking up screaming, my joints aching and frozen everywhere. These are memories that will haunt me forever.

When I was in first grade, I was diagnosed with Juvenile Rheumatoid Arthritis [JRA], a chronic disease that changed my life.

Initially, I wasn’t really sure what this meant for me.

I knew that my body was attacking itself, but I didn’t know the implications. As the years progressed I came to understand my Arthritis better, but I still did not accept it. Because I knew I couldn’t do certain things, I began carrying this burden of constantly being aware and afraid of my body.

There was hope that I would outgrow Arthritis through puberty, so I discarded the term “chronic” disease, and thought of it as a temporary problem. After multiple attempts of going off medicine only to enter another painful flare up, I remember thinking at twelve years old “I’d rather have this disease my entire life than endure the pain of going off medicine one more time.” It was a moment of acceptance that my aching body had blackmailed me into.

Something I found happiness in when I was a kid was the sleep-away camp that I would go to every year. I had to go to the Doctor’s cabin weekly for my shots. I remember crying before camp every year because I didn’t want to have to take my medicine there. Traveling to camp meant flying which meant carrying a lunchbox with my medicine and asking the flight attendants if there was a refrigerator on the plane for it. A simple task, that at nine years old terrified me. That wasn’t the reason why I would cry though. The methotrexate that I was on made me nauseous, and I had to strategically plan which day I was okay with being ruined. It was sad to me that the place that made me the happiest still had to make space for my disease. I never let anyone know how sick I was feeling though. I was a very strong child.

Accepting RA

When I entered high school, and it became apparent that I would have Rheumatoid Arthritis for the rest of my life, and at that point in my life I had accepted it. My Arthritis was fully in control. I went through high school without a single flare-up. Of course I still faced the constant sickness from a less than functioning immune system followed by comments about how I was always sick and tired looking, but I learned not to care. I came to accept that people would always make comments like that, and I realized that explaining myself would either result in people feeling bad for their passing comments that didn’t mean anything or end in more questions with them not understanding, so I decided to keep it to myself. Since I was doing fine, this was an okay method.

When I went to college my freshman year, I experienced my first real flare-up since I had tried to go off my medicine when I was twelve. The Enbrel that I had been taking for most of my life stopped working. Part of me thinks it was the complete life transition of going to college, but some things just happen. I think the weirdest thing about Arthritis is there are so many factors constantly at play that it’s impossible to figure out the cause and effect of any one thing. Everything is a puzzle, and while changing certain things can help, a lot of the time it’s out of any person’s control, because the body has a mind of its own.

When I think of my freshman year of college I think of the debilitating pain I felt. I remember Ubering to class because I could not walk, or bike, or even drive. I remember needing my mom to come drive an hour and pick me up from my dorm, because packing my suitcase and getting to the train was too painful. I find this part hard to explain to people, because the pain of an Arthritis flare-up is not only in stiffness and swelling but it’s to the touch. I couldn’t move or interact with anything without pain.

That year I went on Prednisone and my body felt a little better, but with prednisone comes a whole other Web MD. list of problems.. I gained about 20 pounds from the steroids and constantly felt like my mood and emotions were in full swing. I felt like I was 30% myself and the other part of me had been taken over by the steroids. There were a lot of false alarms of stability as I tried new medicines and experimented with prednisone dosage for the next two years, until my body had finally decided to accept my new medicine.

Going into my junior year of college my body finally felt okay. I was off Prednisone, I had lost the weight that I had gained, and most importantly my joints felt okay. However, my mindset was ruined. I entered into a nihilistic period of hate and pity in which I neglected my mental health and body’s needs in relation to my Arthritis. I had decided I would treat my body like I didn’t have this disease. I was of the school of thought that there was no point in living half a life anyways if I didn’t know how much longer I was going to be alive. I know this sounds dramatic, but I think two years of pain can have that affect on somebody. I gave up my previous patterns and tried to be a “regular” person. But in this case, my “regular” was self-destructive. I got minimal sleep, partied constantly, and treated my body in ways that the tiny voice in my head always echoed an anxiety that I would trigger a flare-up. I fortunately did no such thing, but I think I was scared and angry and wanted to take control of the thing that I never could.

Now I am a senior and have reset my mindset to one that echoes my younger self. I have accepted my disease once again, and while I live in fear everyday, I am trying my best to treat my body in the best way that I can.

I coped with it better at a young age

I think I coped with my Arthritis a lot better when I was younger, because it made a lot more sense. There weren’t as many scary things to consider other than how I currently felt. Now that I’m older I am always scared of triggering a flare-up or getting sick, whether that be from feeling pain one morning or not getting enough sleep the night before. I try and balance these irrational anxieties with understanding why they exist. A lot of people don’t understand why I need to operate the way I do, and a lot of the time I don’t bother explaining it, because it seems so hard to say everything I just did. Even now, there are things that I’m scared I forgot that will change how this story is read, but it’s just one of the many narratives of the 15 year relationship that I have with my Arthritis.

Although Arthritis is a prominent part of my life, most people don’t even know about it. I want to be known for who I am, not my disease. I struggle with minimalizing how I feel surrounding my Arthritis because of this, but I also know that as I mature and grow I will learn to combat this. While most people might not know my disease, they know me. They know my jokes, my advice, and my friendship, which are all directly influenced by this daily battle that I face. While it’s a scary journey, I know that growing up with my Arthritis has made me who I am.

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

View Comments (2)
  • Richard Faust moderator
    2 weeks ago

    Thanks for writing rosieschwarz. As Daniel said, growing up with a chronic condition like RA is certainly not easy. There are people here who understand. On top of Daniel, we have a couple of other contributors who have JAI. My wife, Kelly Mack, is one. She was diagnosed at two, has used a wheelchair since her late teens, and has had RA now for about 40 years. You will probably recognize much in this article on being a child with RA: https://rheumatoidarthritis.net/living/being-a-child/. What I would like to stress to you is that Kelly has a successful career and a full, happy life. In this recent article she wrote about being thankful for aging: https://rheumatoidarthritis.net/living/aging/.

    One of our other contributors, Kat, was also diagnosed at two. Thought you might be interested in this article she wrote on things she learned about living well with RA: https://rheumatoidarthritis.net/living/three-things-ive-learned-about-living-well-with-ra/.

    You are absolutely right, you are more than the RA. Know this community is here for you whenever you need information or just a little extra support. Best, Richard (RheumatoidArthritis.net Team)

  • Daniel Malito moderator
    2 weeks ago

    @rosieschwarz Nine years old here, so I get it. It does make it easier when you get it as a young child, because it is much easier for us to adapt and fit RA (then JRA) into our lives as just another part. We are much more malleable at that age. Great read. Keep on keepin’ on, DPM

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