When were you first diagnosed with lupus, and how did you initially cope with the diagnosis? 
Brenda: I was diagnosed in 1988, and I didn’t cope well. I’d been sick for quite a while and knew something was wrong. The doctor immediately put me on disability, which was a shock. Back then, the information available was outdated and overwhelmingly negative. Being diagnosed felt like a life sentence. There wasn’t much hope for a long life—let alone a good one. 

What’s something about living with lupus that you wish more people understood? 
Brenda: Lupus is like any other critical illness. If you were battling cancer, you’d need chemotherapy to survive. It’s the same for lupus. Just because I look fine doesn’t mean I am fine. Every day is different. I don’t stay home because I want to—I stay home because I have to. 

Can you share a moment when you felt particularly strong or proud of how you’ve managed lupus? 
Brenda: Honestly, I feel proud every single day. Just getting out of bed and walking out the door is an act of strength. No one sees the battle, no one truly knows what it’s like. Families often don’t even acknowledge the disease. It can cause serious strain—even divorce. I also have multiple autoimmune conditions on top of lupus. But I don’t talk about them. I just keep going. 

How does lupus affect your daily life, and what strategies have helped you cope? 
Brenda: At first, I managed pretty well—despite being tired and in pain, I could still work and socialize. Now, with the progression of lupus and additional illnesses, I’ve lost a lot of independence. Daily tasks like cooking and cleaning are hard. I use a scooter to get around, and even going to a restaurant requires planning. I have to think about walking distances, parking, and energy levels. I’ve lost my social life and the ability to attend church regularly. 

What misconceptions about lupus do you often encounter? 
Brenda: The biggest one? “You don’t look sick, so you must not be sick.” I’ve learned to simply say, “Thank you.” I don’t talk about my pain anymore. Only close friends really understand, and even then, it takes them asking, “But how are you really?” That’s why the BC Lupus support group is vital—it’s a space where we can be seen and understood. It’s like a family. 

Has living with lupus changed your outlook on health, relationships, or life in general? 
Brenda: Absolutely. The people who stick around are the ones who truly understand. They don’t get upset when I cancel plans last minute—they know I’m doing my best. It’s strange to say, but your diseases become your companions. You get to know them well. 

What role has community played in your lupus journey? 
Brenda: Unfortunately, community support has been limited. My parents understood, but they’ve passed away. My brothers don’t really get it. I’ve had to handle doctor’s appointments and daily needs on my own. If I had cancer, I think the support would have been different. People don’t understand why I need mobility aids. I live a very isolated life. That’s one reason I run a support group—because I know how hard it can be, especially for single people without family support. 

What advice would you give to someone newly diagnosed and feeling overwhelmed? 
Brenda: First, I listen. I find out what their needs are—whether it’s emotional, financial, or medical. I ask about their work situation, if they’re applying for disability, and what kind of support they need. I don’t try to do it all in one conversation. It’s about meeting them where they are and supporting them at their pace. 

How did you get involved with the BC Lupus Society? 
Brenda: It’s kind of a funny story. I got a piece of mail by mistake—an invitation to a BC Lupus symposium. I’d never heard of the Society, but I went. I met someone there who also had lupus, and we connected right away. That led to joining the support group. Later, I saw a position advertised on Facebook and applied. I’ve been with the Society for almost 11 years now. 

How has working with the BC Lupus Society shaped your perspective? 
Brenda: It’s given me a deeper understanding of lupus and the wide range of experiences people have with it. I’ve learned so much—not just about lupus, but about compassion, brain fog, and overlapping illnesses. Honestly, the members of BC Lupus are my support system. I care deeply about this work because I know how important it is. 

Any last thoughts or comment?
Brenda: Someone once asked me if I was angry that I hadn’t been healed—if I’d want to live without lupus. I said, “If I didn’t have lupus, I wouldn’t be here having this conversation. I wouldn’t have met the people I’ve met.” If I can touch even one person through this work, I’ve done my job. And if BC Lupus touches one person with the funds we raise—we’ve done our job.