Chapter 1: The Unseen Battle

I sensed something was amiss. This was my third trip to the doctor in just a month, yet the routine prescriptions of antibiotics, rest, and hydration were falling short. Aches and overwhelming fatigue had become my new normal. With some adjustments, I managed to get back to my daily routine, but the symptoms, which initially came in small bursts, escalated in frequency and intensity without any relief. Today, I was seeking answers and hoping for a resolution.

Am I dying?

The doctor walked in, and I found myself fixating on the posters lining the walls, trying to avoid his gaze to prevent reading too much into his expression. Previous medical tests had merely confirmed pregnancies; this was entirely different. Armed with a wealth of information from my online searches, I feared the worst outcomes. I was desperate to uncover what was draining my energy and causing my pain.

"Do you have any questions for the pharmacist?" the cheerful clerk asked as she handed me a bag overflowing with bottles.

My journey had transitioned from taking an occasional ibuprofen to managing a handful of pills daily.

The doctor’s words hit hard. When I broke down in tears, he quickly reassured me, "You won't die from Lupus. With proper treatment, it can be managed." He left the room to give me a moment, returning with pamphlets, prescriptions, and referrals to specialists.

Over the years, I underwent numerous tests and procedures, with my medications frequently adjusted until we found the right combination. A decade later, the illness mostly remains dormant, only to remind me of its presence unexpectedly. When I experience a Lupus flare-up, the symptoms can be mild or severe, lasting anywhere from a day to several.

Debilitating fatigue, swelling, pain, muscle cramps, joint stiffness, and bright red rashes on my face are all part of the package. It's a tough battle, yet I often forget the extent of destruction this condition can cause, including potential organ failure.

On most days, I carry on with life, oblivious to the nuances of my illness, including the risk of blood clots. Regular visits to the clinic made me a familiar face to the staff. If my test results indicated low INR levels, the risk of blood clots would rise.

The moment I experienced a blood clot in my lungs, it felt like a sudden stop. The sharp pain on my side forced me to take shallow breaths. While I’ve never been stabbed, I can only imagine the pain felt similar.

I do what I can to manage this condition. While there's no cure yet, I focus on my diet and exercise regularly. I also express gratitude to God for my health.

When I was diagnosed in 2014, I felt isolated, thinking Lupus was rare. Over time, I learned it’s quite common, and many know someone affected by it. Conversations often take a familiar path: the highs and lows of living with Lupus.

"Wow, you look great... for someone with Lupus."

I've heard it all before. "I know someone with Lupus, and they are really sick."

They suffer, battling constant hospitalizations, surgeries, and organ failure.

I once received distressing news from my sister shortly after my diagnosis—a former coworker’s daughter had just passed away from Lupus. The message hit hard.

"Did it occur to you that sharing this might not be the best idea for someone newly diagnosed?" I firmly asked her.

Chapter 2: Navigating Relationships

After my divorce, I ventured into the dating world through an app. After exchanging messages for a couple of weeks, I finally shared my number with a guy. I don’t typically lead with "Hey, I have Lupus." When he inquired why I wasn't working, I explained I was disabled.

He seemed hesitant but pressed on, asking about my condition. It was a valid question; after all, he wanted to gauge what he was getting into.

He shared stories of women he knew with Lupus. Some were struggling, while one was thriving—like me. "I’ll check in on her later," he said, but I reminded him of my presence.

That conversation was our last. A few texts followed, but I chose not to engage further. I wasn't sure whether to believe him or if he was trying to impress me with his knowledge of the disease. It felt off—a red flag.

When flare-ups hit, I notice the red, blotchy skin on my cheeks first. If it’s mild, I can cover it up; major breakouts demand more serious intervention. The last significant flare took nearly four months to resolve.

However, that’s minor compared to the chaos happening within my body. Lupus is an autoimmune disorder where the body essentially turns on itself. Each person’s experience with Lupus is unique, with varying symptoms and treatment responses.

There are times when diseases can remain dormant for years. A perfect storm of environment, stress, and infection can trigger symptoms. For me, they surfaced shortly after my mother's death, leading everyone, including myself, to assume I was merely grieving.

My brother even suggested I made myself sick. I began to question my mental state, wondering if it was all in my head. Discovering that there was indeed something wrong with me was a relief.

I don't possess a miracle cure for my condition. Instead, I’ve uncovered a resilience within myself that I never knew existed. While I've made strides in my eating habits, I certainly don’t claim to be perfect.

I visited countless specialists, often leaving with as little clarity as when I arrived. One doctor advised me to exercise, though it felt more like an afterthought than a real recommendation. At that time, I was struggling with severe fatigue, making it a challenge just to get dressed.

I considered holistic approaches, but unfortunately, they were not covered by my insurance.

I found more valuable insights through blogs created by others living with Lupus. Unfortunately, doctors rarely recommend holistic methods or lifestyle changes like adopting a whole-food diet and regular exercise. The healthcare system often focuses on treating conditions rather than curing them, as there’s more profit in the former.

It’s a harsh reality. Perhaps one day, a cure will be found. Until then, I pray that I can continue to be an exception while managing this condition.

In the video "What Chronic Illness Taught Me About Life," the speaker shares personal insights gained from their journey with a chronic illness, highlighting resilience and lessons learned.

The second video, "Living With Chronic Pain That Even Doctors Don't Believe - This Is Fibromyalgia," explores the struggles of living with a condition that is often misunderstood, shedding light on the importance of empathy and awareness.