When you have got a chronic illness, you face three battles. One being the illness itself, the others being either proving you are ill enough or not that ill at all. And it just sucks!
Battle one
a. Facing the Diagnosis: Lupus Nephritis and Its Impact
So, you’ve got Lupus Nephritis. Lupus nephritis is an inflammation of the kidneys caused by systemic lupus erythematosus, an autoimmune disease. It is a type of glomerulonephritis in which the glomeruli become inflamed.
I didn’t hear anything after “Lupus Nephritis.” I knew what it meant. Ever since they thought I might have lupus, I had been googling intensively. I understood the term in theory but wasn’t ready to accept that I had to deal with lupus daily. Although I had been unknowingly dealing with it before the official diagnosis, I had gone to the doctor hoping for a straightforward "take this, do this" kind of solution.
b. Living with the Symptoms: The Daily Struggle of Lupus
Now, armed with a name for the disease, I finally had explanations for my relentless fatigue, pain, fevers, and rashes. It explained everything—but cured nothing. The medicines I had to start taking daily were heavy and came with a slew of side effects. Suddenly, I was dealing with nausea, dizzy spells, fainting, heart palpitations, and mood swings. On top of that, migraines, tension headaches, anxiety, and extreme stomach pain became part of my new normal. Every new medication brought a new set of challenges, and each passing year seemed to add another chronic illness to my list. My doctor’s words—"They never come alone"—echoed ominously.
c. The Ongoing Battle
The list of symptoms I manage daily is long. My first battle, the disease itself, is hard enough, but the ripple effects make it even more challenging.
Battle two
a. The Fight for Mobility and Understanding
After two years of living with an official diagnosis, I needed a wheelchair. The pain was too intense to move around freely, I fainted too often, and sitting down simply made life more bearable. I decided to apply for a government-funded wheelchair, which required a doctor’s assessment to determine if I truly needed it.
“You can walk!?” the doctor asked. The stigma was palpable. People constantly question my need for a wheelchair, and this intrusive comment wasn’t new. While such remarks might be expected from strangers on the street, they come from everywhere—even from professionals in hospitals. I found myself having to prove I was "sick enough" to warrant help. On the streets, I had to prove I was ill enough to justify using a wheelchair, despite people’s insistence that I “look perfectly healthy.” Even my family needed repeated explanations before they fully understood my reality.
b. The Communication Struggle
Explaining to the doctor why I could technically walk but still needed a wheelchair was exhausting. Battle two turned out to be about clear communication—articulating my needs in a way that would convince others of my reality. Even now, knowing what I’m up against, it remains an incredibly hard fight.
Battle 3
a. Proving My Capability
During an interview for college, they asked me, “How do you expect to study when you are… well, in a wheelchair?” I was baffled. My wheelchair symbolized freedom, not limitation—it enabled me to do more, to attend college in the first place. Yet, there I was, having to defend my ability to pursue education despite my chronic illness. It felt like I had to sell myself even harder than someone without a disability, constantly proving that I was capable and “well enough” to succeed.
b. Fighting Stigma and Expectations
Battle three is about proving I can still do things. I fight the perception that my illness or my wheelchair defines my abilities. It’s a relentless battle to showcase my strengths, defy assumptions, and claim the opportunities I deserve.
c. The Daily Fight
These three battles—navigating medical systems, confronting stigma, and asserting my capabilities—are woven into my daily routine. I manage them as best as I can, juggling doctor’s appointments, societal judgment, and the fight for my rights, all while feeling unwell. This is the reality of my life with lupus: a continuous struggle, but one I refuse to back down from.