Why Living With Lupus Feels Like Navigating a Field of Boulders

As a young girl I spent some time participating in the Girl Scouts of America program in a small town outside of Philadelphia. We traveled to various parks to camp and learn about historical figures. Being right near Philadelphia, I was able to really engross myself in the history and spirit of the United States. I went on field trips to downtown Philly to see the “Liberty Bell” (they told us the real one isn’t displayed in order to preserve it), Native American artifacts and Quaker religious grounds at the White Clay Creek Preserve and the Gettysburg battlefields, to name a few.

One trip we took brought us to the Hickory Run State Park – close to the Poconos in Pennsylvania. We arrived and all you could see were boulders as far as the eye could see, some five times as big as my fifth-grade self.

We were allowed to climb across the field for hours. My friends at the time took off and were able to leap from one boulder to the other, never tripping or fearing the large gaps that existed. I remember I took my time, I slowly hopped from rock to boulder, trying to avoid the gaps and not wipe out. That field trip really stuck with me over the years – who knew it would predict my future roadmap with lupus.

From the beginning of my journey in high school, when I began to develop Raynaud’s Phenomenon, the disease took almost four years to fully unveil itself. Just like that boulder field I carefully crawled over, the scary doctor appointments, blood tests and medical students poking at my hands and feet like a lab rat were the smaller obstacles that weren’t very intimidating. I would go home and to school, wearing gloves and extra clothing in order to overcome the temporary battle against the cold. Just as others were able to move much more quickly over the rocks, other kids were able to run outside in the snow, or wear t-shirts when it was 70 degrees outside; however, I could not.

As I went further down my path, those rocks became larger and further apart. I feared that snakes and bees’ nests would pop out at me while I tried hopping to the other side. Along the way, I did encounter humans who sneered and smirked at my struggles that they did not want to understand. I had to keep reminding myself that I was faster, stronger and had more willpower to overcome the negativity and insecurities that fueled that behavior.

I did notice that with every large boulder, there was a much smaller and easier rock I knew I could step on without any worry. I was able to gain mental strength and confidence from being forced to face my fears.

Eventually, getting blood drawn became a part of normal doctor visits. I knew they helped me check my body for disease activity and helped to keep me healthy.

As one would expect, I eventually came to the biggest gap between two boulders I had ever seen and I was exhausted. How would I keep up with the others? My heart was now giving me problems, my legs looked like tree trunks from all the steroids I was on, my face was the shape of a round wheel of provolone cheese. I eventually found my jar of bravery, opened it up and problem-solved my way to the other side. I did take longer than the others, but I used my past experiences to help me walk my way around the dangerous gap and onto the other side, ready to continue down my path.

Eventually we all were called back as a troop to climb back to the parking lot. The field was much less intimidating and I found myself almost sad that the challenges were over. Now that my condition is much more controlled, I sometimes find myself wondering if I received the right diagnosis or have made up all of that pain and struggling I endured a few years ago. It can seem like you have lived more than one life as you move from chapter to chapter in the struggle against lupus. But then a new symptom rears its ugly head or I am melted into my bed for two days until my steroids kick in, which brings me back to reality.

Unfortunately, I will never be able to go back to the start from where I came like I did on that Girl Scout trip. My lupus journey will continue to sometimes be easy and sometimes make me feel like there is no way I can survive the systemic pain. But I do. I survive and I keep going. I grow from each day’s events and know I am always headed in a better direction than I was the day before. If life were like that boulder field, there would be no true journey or personal growth. To me, that seems pretty boring.

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Thinkstock photo via aoldman.