Change for the Better
Last updated: May 2023
I grew up in a happy family, with few health concerns.
Learning I have lupus
I had big dreams for the future, and had just finished my freshman year of my undergrad degree when the semester was cut short due to Covid. Over the summer, my health rapidly declined as I searched for answers but came up short. I lost 30 lbs in 3 months (malnutrition due to nausea and lack of appetite), experienced debilitating joint pain, and a lived in a fever daze over 100+ degrees for a month and a half. I remember sitting in a chair, too numb and exhausted to even respond when someone called my name. I slept poorly due to night sweats. After being sent back once from the ER after being told I was dehydrated, I was finally admitted to the hospital where dozens of tests were run over a week. It was a miracle from God that a visiting doctor came to see me and was able to diagnose me with Lupus.
The emotional aftermath
After being transported to Madison, I was diagnosed with SLE (kidneys) and MAS (which is what caused me almost to die), where the doctors tested various meds to see which ones worked for me.
While the physical part of Lupus was hard, the emotional aftermath was the hardest part. Since I had always been pretty healthy, the fact that I had almost died and now had a chronic disease was hard to comprehend. Plus the 12 meds I was on at the time messed with my emotions. I was paranoid, depressed, anxious, irritable, moody, and hopeless. I am an introvert and felt incredibly vulnerable after being poked and prodded in the hospital. On top of that, my entire experience had become public as people had prayed for and read about my journey. I just wanted my life back and a chance to heal. All my dreams were destroyed and my life looked uncertain. The pressure to "be a normal adult" and return to finish my degree weighed on me. I clung to the relationships I had built in college, but compared myself constantly to them. Certain things would trigger me - the sound of the AC, hospitals, babies (looking at them made me think of how vulnerable I had been), certain smells, being touched - and I would feel as if I were back in the worst of it.
Picking up the pieces
I was fortunate to have a strong support system of family, church family, friends, and most importantly, God. I struggled with the thought of being abandoned due to how ugly I had become physically (lost all my hair) and personally (my emotions/personality were radically different from before). I doubted my faith in God and His very existence/goodness and had to rebuild my relationship with Him as I slowly regained belief in His love, ultimate goodness, and good plan for me. I thought that no one could love a burden like me now that I was semi-dependent on my parents for support. But slowly, I began to heal and live again, and am proud to say that I finished my associate's degree online and am now pursuing my original dream on a smaller scale.
Learning to value each day
While this whole journey has been incredibly difficult, it has changed my life for the better. I see the suffering of others more clearly now. I am more secure in my relationships and in the love I receive. I have learned to listen to my body and live a healthier lifestyle - even though that health is counter intuitive to what many consider to be healthy (I e., sun is bad, immune-supporting foods are bad). Throughout this whole experience, I have become more vulnerable and open about how I'm feeling/doing to my family and friends - if you don't let them know, they can't help you on your bad days. I have learned to value each day and to maximize the time I have. I have begin to journalmore (I journaled my entire hospital experience - even though I still haven't gathered the courage to go back and read through it, that's ok). And I have learned to accept help. Finally, I have learned that everyone's journey is different and I should not compare my pain to others. Each of us has scars from our journey, and spend each day struggling to overcome our pain. Some days we succeed, some days we fail. But ultimately, I hope that we can all look back and see some beauty emerge from the pain as we change for the better. Embracing life with Lupus one day at a time🦋
How are you most likely to respond when someone offers you unsolicited advice about your lupus?