When did first experience symptoms of lupus?

My journey with lupus began in October 2014, sparked by something I never expected—my breast turned purple. I went to a walk-in clinic, where I was told it was just a rash, likely an allergic reaction. I was prescribed allergy pills and told to return if it didn’t improve. But it didn’t. It got worse. I went back. Swabs were taken, but the conclusion was the same: an allergy.

By December, the rash had spread. My family doctor offered another allergy medication and referred me to a dermatologist, who echoed the same diagnosis. I insisted that nothing had changed—no new soaps, no anxiety, no unusual stress. My concerns were dismissed again. On Christmas day I went to the ER and was prescribed prednisone. Finally, by December 30, with no improvement, my family doctor finally ordered bloodwork. On January 4, 2015, I was diagnosed with lupus.

Has your experience with healthcare professionals improved since your diagnosis?

That day marked the start of a new, challenging chapter. I had to return to the hospital due to a racing heart, dangerously high blood pressure, and extreme fatigue. A cardiologist dismissed my symptoms and accused me of "med-seeking," claiming I was misdiagnosed. I felt completely overlooked. At first, I was diagnosed with vasculitis lupus and placed on high-dose steroids, which severely affected my mental health. I experienced a wide range of symptoms: high blood pressure, chronic fatigue, breathing difficulties, facial rashes, hair loss, blood in my urine, joint pain, and migraines. Yet, I cycled through three rheumatologists who didn’t take me seriously. Finding the right support changed made the biggest difference.

My current rheumatologist listened. She believed me. She worked with a team to confirm I had Systemic Lupus Erythematosus (SLE)—a severe, multi-system form of lupus.

One of the hardest lessons I’ve learned is dealing with the unknown. It’s not just my health—it’s how others, especially in emergency settings, perceive me. I walk in asking for help, but too often I’m viewed as someone seeking drugs rather than someone fighting to survive. The misinformation is heartbreaking. Some doctors say, “It’s all in your head,” and suggest I stop my medication. But how do I explain the 200+ blood pressure, the inability to walk, the constant exhaustion? Over the years, I’ve learned that some doctors will be temporary guides on this journey—others will stay with you through it all.

Can you describe a time when your voice made a difference in how you were treated or cared for as a patient?

In October 2024, I was hospitalized with life-threatening symptoms—vomiting blood, dangerously high blood pressure, and severe pain. It was the scariest moment of my life. Despite my critical condition and a complex history with lupus and vasculitis, I was nearly sent home from the ER. I had to firmly advocate for myself, explaining my diagnoses and medical team before being admitted.

Two days later, I was asked whether I wanted a DNR or full code—a terrifying decision no one should face without proper support. I chose full life-saving measures after speaking with my husband.

I then endured six days in a hallway, sleep-deprived, and on expired medication due to system delays. That experience deeply exposed the gaps in care for patients with complex, chronic conditions.

It strengthened my commitment to advocacy—especially for those who can’t speak up for themselves. Today, I work full-time in mental health with Correctional Services Canada, and I continue to push for patient-centered care, accessibility, and systemic accountability.

What does life with lupus look like today and how do you cope?

Each day, I take over 3500 mg of medication. My lupus has now progressed to my major organs. I’ve added more specialists to my team to help keep me functioning. I stay connected with my doctors through calls, emails, and appointments.

There’s a silent pressure to maintain composure, to be the helper—not the one in need of help. The fear of being seen as weak has been a barrier, even when I know intellectually that vulnerability is human. Still, I try to lead my life with gratitude. That perspective carries over into the work I do with offenders, where compassion, dignity, and empathy can transform how people see themselves and each other. Even when I’m struggling, I aim to treat others with understanding—because I know how much it matters to feel seen and valued.

One of the most profound sources of strength in my life is MacIntosh, my Pacific Assistance Dogs Society (PADS) dog. MacIntosh is incredibly attuned to both my physical and emotional needs. He senses when something is wrong—often before I say a word. If my heart is racing, he alerts me. If I’m in pain or too fatigued to move, he lays beside me with a quiet calm that keeps me grounded. He has even alerted my family during moments of distress and visited me during hospital stays, offering comfort no human words could replicate. He helps me feel safe. He helps me feel whole.

Do you have a support system that you can lean on?

My family has stood by me through some of the most difficult chapters of my life—even when they, too, feel worn down by a healthcare system that often fails to understand or support those living with chronic illness. Their love has remained constant, even when answers were scarce, and hope felt fragile. My spouse has walked this path beside me—not just as a partner, but as a silent witness to the pain, the fatigue, and the many sacrifices lupus demands.

My coworkers have also shown me a level of understanding and empathy that I didn’t expect but will always be grateful for. In a world where invisible illnesses are so often dismissed or misunderstood, having colleagues who ask, listen, and offer support without judgment has made all the difference.

One of the greatest sources of connection has come through the BC Lupus Society. They’ve been more than just a resource—they’ve been a lifeline. Through their outreach, I’ve connected with others who truly understand what it means to live with this unpredictable, invisible disease. There’s something powerful about being surrounded—virtually or physically—by people who don’t need an explanation.

Is there anything you wish more people understood about the disease?

Lupus has a thousand faces—no two people experience it the same way. It’s a complex, life-threatening autoimmune disease with no cure. While illnesses like cancer often receive widespread attention and empathy, lupus continues to be misunderstood, minimized, or ignored by the public—and, too often, by the medical system itself. I’ve had cancer, too. But unlike cancer, lupus often doesn’t show on the outside. People assume you’re fine because you "look okay." What they don’t see is the pain, the fatigue, the brain fog, and the emotional toll that becomes a part of everyday existence. This disease can steal your strength, mobility, and independence in the blink of an eye.

What message would you like to share for those recently diagnosed?

If you’ve just been diagnosed with lupus, take a deep breath—and know this: You are not alone. It may feel overwhelming right now. The medical terms, the uncertainty, the fear of what your future holds—it’s a lot to take in. But please know that there is a community out here that understands, and you do not have to face this journey in isolation. Start by asking for help. Whether it’s from your doctor, your loved ones, or others living with lupus—reaching out is not weakness; it’s wisdom. You deserve care, answers, and support. Don’t be afraid to advocate for yourself or to say, “I’m not okay.” Organizations like the BC Lupus Society have created spaces filled with compassion, knowledge, and shared experience. There, you’ll meet others who truly “get it”—people who understand what it means to look fine on the outside while battling pain and exhaustion on the inside.

Give yourself permission to grieve, to rest, to learn, and to grow. Your story does not end with a diagnosis. In many ways, it’s a new beginning—one where self-awareness, resilience, and connection can shape a life full of meaning and purpose. You are part of a community now—one that lifts each other up, one day at a time.