Updated: Jul 9, 2020
| This is the 139th story of Our Life Logs |
It’s a late night under an inky sky as I walk across campus from the theatre back to my apartment. The chilly night air rustles past me as I shift the books in my arms and pull my scarf tighter around my neck. The dull throb through my arms sharpens a bit as I do so, and I look down at my hands. Pale purple and white, they look almost bruised in the light coming from the buildings I pass.
Though nothing out of the ordinary, I pause to think about the shift in the color of my hands. The cold never helped, but anyone who ever grew up in Southern California has a lower threshold for the cold, naturally. But it shouldn’t hurt down to my bones, should it? Absolutely exhausted, I push through a yawn and continue the long walk back home from another late-night rehearsal.
1 | The Search for Some Answers
Born to a family of very strong-willed and hardworking people in the mid-90s, I realized quickly that I had a bit of a natural predisposition towards things; for instance, I always worked incredibly hard in school–academics came naturally to me since I was very young, but I consistently pushed myself to maintain high grades and produce quality work. It was just me, my older sister, and my mother for the majority of my time growing up, and I think that really set in stone our natural tendency to rise up and handle anything that life throws at us.
This root of desiring high-quality achievement carried through my adolescence. However, I also found I had some less than desirable traits. Sports were tough for me, since I always seemed to have trouble breathing deeply. I would get sick all the time, and a persistent tiredness seemed to haunt me like a dark cloud. It seemed that for how hard I worked to press forward, I got drained far more quickly than the others around me. I never felt that anything about my spirit ever really indicated that I was lazy—so, why were these roadblocks always in front of me?
2 | A Fresh Start, a Steep Drop
When I began my freshman year of college in 2012, things began to take an even sharper descent into difficulty. In a true “go-getter” fashion, I made sure I took a full load of courses. I consistently auditioned for the theater productions, made sure I spent quality time with my boyfriend at the time, Bryan, and remained highly involved with the school choir. Such a schedule would be a heavy weight for anybody, but there was something very wrong with how my body was handling the new stresses. The tiredness began to seep into a regular state of exhaustion and I had sickness after sickness. I began to notice thick clumps of hair falling all over the bathroom as I got ready each morning. College is stressful for everyone, I thought, perhaps this could be normal for some people. Slowly, I came to the realization that I was utterly alone in this way.
It was becoming unbearable, I felt so deeply compelled to deliver on all my promises and commitments, and yet I could feel my body shutting down around me. I had to get to the bottom of this. There was no way all of these things that were happening to me were normal.
3 | Seeking the Truth
Towards the end of my freshman year, I went to see a doctor to hear his thoughts about what was happening to me. He listened to all the symptoms I was experiencing, and calmly assured me, “This is just the way your body is. There is no medical problem; this is simply how things are for you.”
I was so downhearted. I felt my stomach drop, and a feeling of embarrassment for “crying wolf” about my symptoms bubbled up inside me. How many times had I passed up going out with friends because I was too tired? To learn that there was nothing actually wrong with me was a lot to handle. “Just how I am.” It rang through my head for days upon days. Every time my fingers ached, or I saw hair falling out, I stifled every feeling of irritation. I felt like I had no right to feel frustrated or take a break because this was just the way my body was.
But as I muscled through month after month, something in my gut compelled me to get a second opinion–I needed answers and, “This is just the way you are,” didn’t sit well with me.
Shortly after that I marched myself into another doctor’s office only to receive a repeat performance. The same “diagnosis.” I sat with the weight of it for a few years, simply dug my heels in throughout college to fight my body’s natural negative disposition towards stress and my hard work. I refused to let this stand in the way of my success or my enjoyment of this wonderful time of my life.
Bryan and my friends were incredibly supportive every step of the way, and I will always be thankful. Bryan and I had a wonderful experience chipping away at classes together, and he proved himself as a strong support in my life.
4 | Once More in Search
I graduated college in 2016, and with the impending changes to my daily life, I decided I would visit one more doctor about the issues I had been dealing with. Once again, I sat in a doctor’s office, listed off my struggles, and braced for the impact of being brushed aside once again. I finished talking, and the doctor paused. He slowly remarked, “You know…it sounds like you might actually have Lupus.” The knot in the pit of my stomach loosened a bit; was there actually a reason for everything I had been experiencing? A few tests later, my Lupus diagnosis was confirmed. The relief I felt was incredible–I no longer felt like the boy who cried wolf.
For years now, my body was literally at war with itself. When you have Lupus, your immune system is hyperactive and attacks the healthy tissues in your body, especially the joints, which is what caused my pain, the hair loss, and the excessive cold that always bites at my hands and feet.
It’s an odd thing, to receive an answer to a puzzle you’ve had in your hands for so long, after so many prayers have been uttered and tears shed. Everything shifts a little, and a new dichotomy is born. On the one hand, having the means to address and treat the symptoms you’ve struggled against is incredibly relieving; on the other hand, there comes a certain amount of new limitations with that knowledge. I found out that overworking myself and stress can worsen my symptoms, so my natural desire to push through my symptoms would now have to change completely. I wouldn’t be bedridden or feeble at all, but I now had to get serious about giving myself time to rest and recover.
5 | Relearning How to Walk