At 20, most people are relatively carefree about their health. But there I was, sitting in a rheumatologist's cold office, unsure what was causing my symptoms, and unaware that the news I was going to receive would start my autoimmune journey.
As an aspiring pharmacist, I was excitedly finishing my undergraduate senior year and looking forward to taking a gap year. I was all set to relax a bit, enjoy time with my friends, and prepare a little before starting pharmacy school. One day, I noticed something unusual: My fingers occasionally turned an eerie shade of blue. At first, I brushed it off, thinking it was just a quirk of my body. But as the months passed, and my fingers turned blue more frequently, I decided to see a doctor. That decision, however, led to an experience that many of us with chronic conditions may know all too well—I was initially dismissed because my fingers didn't turn blue in the doctor's office.
A few months later, my condition worsened. Painful finger ulcers began to plague me, and after being referred to and visiting several doctors, I was finally told that the fingers turning blue was Raynaud’s phenomenon, and after a series of exams and lab tests, I was diagnosed with undifferentiated connective tissue disease. This diagnosis later transformed into scleroderma. The news that I had a very serious condition was extremely difficult for me to process. While I had dreams of attending pharmacy school and pursuing a fulfilling career, all around me my friends were healthy, embarking on their careers, traveling, and living life to the fullest. I didn't know how to talk about my illness, so I kept it to myself. I took the prescribed medications and attended countless medical appointments, which included going to rheumatologists, nephrologists, pulmonologists, and immunologists, but I remained silent about the emotional toll it was taking on me. I felt sadness and anger, questioning the fairness of it all— Why was this happening to me? I thought. Was I to blame? Why did I have to worry about the potential of an autoimmune disease attacking my body’s cells and organs?
I’m an Asian man, and in my family I’d grown accustomed to experiencing a cultural background where vulnerability and sharing emotions didn’t happen regularly. Suppressing feelings and enduring pain without complaint was encouraged. Strength was equated with stoicism, "sucking it up," and projecting physical toughness. These expectations, however wrong or ignorant, made it even more challenging for me to open up about my struggles. I knew I had friends who would support me, but talking about what was bothering us just wasn’t something we did often. I didn’t have examples or role models on how to open up about my health and how I was hurting and scared inside.
My most recent chapter in my autoimmune journey unfolded during the COVID-19 pandemic. Over a series of months, I developed unexplainable rashes, swollen lymph nodes, a flare-up of alopecia areata, and dark spots on my hands. Things took a frightening turn when I experienced excruciating stomach pain and noticed blood in my urine. My initial visits to the hospital left me without an explanation of what caused my symptoms. On my second visit to the ER, I arrived in pretty bad shape with severe pain, and initial tests didn’t seem to clarify what was happening. I was discharged, and I felt fine for a couple of days at home, but I still didn’t know what was ailing me. However, my symptoms came back with a vengeance after finishing work one evening; intense abdominal pain suddenly hit me. It was the early days of the COVID-19 restrictions, and I was working from home. I was bent over in so much pain, hardly able to move, that I had to call my father to take me to the ER. At one point, the doctors worried that I might have internal bleeding and would need surgery within the next couple of hours. After a long night, it was determined that I didn’t need surgery for now because there was no more blood in my urine.
After a couple of days of tests and scans that ruled out several causes of my symptoms, I received a kidney biopsy to see if lupus and lupus nephritis were the root of my problems. I remember lying on the table as I was getting the kidney biopsy, just hoping the procedure would be okay and help give the doctors some piece of information to help treat me. The biopsy results confirmed what was suspected; I was diagnosed with lupus and lupus nephritis. This new diagnosis was a heavy blow, and once again, I grappled with feelings of isolation and fear, especially knowing lupus was already impacting my kidneys.
But this time, something was different—I had grown older and wiser.
One thing I’ve learned is how important it is to find the support you need when dealing with a life-changing disease such as lupus nephritis. Once I recognized and accepted that, I began to approach things differently. I reached out for help. I sought out support groups and started seeing a therapist. These support groups became my lifeline. Being in a space where others understood my journey, shared similar experiences, and were honest about their challenges was immensely comforting. I could open up about some of my deepest fears: I’m married now, will I be able to raise children knowing my health is so uncertain, and I could potentially pass this on to them? How can I talk to my work about my health—will it affect my career?
It has been a journey learning more about my body and this disease. From understanding and managing my lupus triggers (mainly the sun and stress), to managing the numerous medications and appointments, and learning about my energy boundaries, it has been a constant challenge to find my “new normal”. I am more than my diagnosis but I have accepted that lupus is part of who I am.
I am joining thousands of people across the country for the Walk to End Lupus Now®. I hope that you will join me either by lacing up your sneakers or by donating to my fundraising page.
