Living with lupus means constantly adjusting to the fluctuating demands of your health, your career, and your relationships. Some days, it feels like everything is competing for your attention, and managing it all can feel overwhelming. In this post, I’ll share some practical, tangible tips that have helped me balance my work, relationships, and lupus management after living with lupus for over 20 years.
Prioritize Using the Wheel of Life
A key concept that’s helped me find balance is the idea that life isn’t about doing it all— it’s about doing what matters most. This is where the “wheel of life” framework comes in. The wheel is a simple tool that divides your life into different areas — health, relationships, work, personal growth, finances, etc. By evaluating how much energy and time you’re giving to each of these areas, you can identify what needs more focus.
For example, when I’m going through a flare, my wheel shifts, and health becomes the top priority. Recognizing that life is cyclical, and sometimes one area needs more attention than another, has been essential. Here’s a simple exercise you can try:
- Draw a circle and divide it into segments representing key areas of your life.
- Rate each area from 1-10 based on how satisfied you are in that area.
- Reflect: Where can you shift your focus to bring more balance and harmony into your life
- Leverage Workplace Accommodations
One of the most important things I’ve learned is to ask for support at work. Many companies have policies in place to support employees with disabilities, including chronic conditions like lupus. This might include flexible hours, the ability to work from home, or even modified duties during flare-ups.
Some practical tips to navigate accommodations at work or school:
- Know your rights: In Ontario, the Accessibility for Ontarians with Disabilities Act (AODA) mandates that workplaces must accommodate employees with disabilities.
- Speak up early: If you’re newly diagnosed or experiencing a flare, set up a meeting with your HR department or supervisor. Discuss accommodations you may need, such as flexible work hours or permission to attend medical appointments during work hours.
- Don’t be afraid to ask for help: It’s OK to ask for adjustments that will make it easier for you to do your job without sacrificing your health. If you’re unsure about how to ask, consider focusing on what you need most (like extra time for deadlines or less travel) and how it will help you remain productive in the long run.
- Understand school accommodations: Most educational institutions offer accommodations like extended time for exams, access to notes, or extra time for assignments.
Navigating Flares in Work and Relationships
When a lupus flare hits, it can feel like everything comes to a halt. However, I’ve learned that being transparent and proactive can help ease the pressure. During a flare, it’s important to communicate clearly about what you need from others — both at work and in personal relationships.
Here are a few tips that work for me:
- Be upfront: Whether it’s with your boss, coworkers, or loved ones, let them know you’re experiencing a flare and what you need in that moment.
- Be flexible: Not every flare is the same, and the support you need can change. Take a few moments to reflect on your needs. Sometimes it’s just a matter of reducing your social commitments, while other times you may need full bed rest or to adjust your work schedule.
- Practice self-compassion: You can’t pour from an empty cup. If you’re constantly pushing through pain or fatigue, you’ll burn out. Be gentle with yourself when things don’t go as planned and give yourself permission to rest when you need it.
- Communicate in relationships: Sometimes lupus makes me withdraw from social activities, and it’s important to explain why to my friends and family. Being open helps prevent misunderstandings and ensures you get the support you need.
Stay Aligned with Your Long-Term Vision
It’s easy to get frustrated when your body doesn’t want to cooperate with your career or life goals. But I’ve learned that staying aligned with my long-term vision — while being realistic about my health needs — is essential. Sometimes, progress isn’t linear, and that’s okay.
Here’s how I do it:
- Break goals into small steps: When I feel overwhelmed by my goals, I break them down into manageable tasks. For example, if I have a big work project, I break it into smaller tasks and prioritize the most important ones. This helps me stay productive without overexerting myself.
- Check in with yourself regularly: I make it a habit to check in with my body, mind, and spirit every week. This helps me assess how I’m feeling and whether I need to adjust my plans.
- Practice the “long game” mentality: I remind myself that living with lupus means playing the long game. I may not achieve everything I want in a single day, but with consistent effort and self-compassion, I’m still moving forward.
A Holistic Approach
As a health coach, I help other women with lupus reclaim their vitality and confidence, and I use the same principles in my own life. I’ve developed a step-by-step approach that has helped me move from overwhelming pain and fatigue to feeling energized and pain-free.
Through lifestyle medicine, I’ve empowered myself to make sustainable & simple but effective strategies that allow me to take control of my health, listen to my body, and feel confident in managing my lupus.
The learning process hasn’t been easy, but now I know how to thrive despite lupus, rather than just survive.
Balancing work, relationships, and life with lupus isn’t easy, but it’s possible. It requires patience, self-awareness, and the willingness to prioritize what truly matters. Life isn’t about doing everything perfectly; it’s about making the right choices for your health and well-being and understanding that you can adjust as life’s seasons change. By taking it one step at a time and using the strategies I’ve shared, you can create a life that’s manageable, fulfilling, and aligned with your values.