Things I Wish I Knew When I Was First Diagnosed with Lupus

I’ve struggled with autoimmune diseases for the majority of my life, and a year of Lupus flares before I figured out that my “healthy eating” wasn’t enough. I needed to figure out what were my personal triggers.

I was diagnosed with Lupus 11 years ago. For the first year, I was having terrible flares - lots of joint and muscle pain, skin rashes and fatigue. I felt so much fatigue, face rash, I had joint and muscle pain, I could barely move in the mornings and generally felt terrible overall. Fatigue, joint and muscle pain are super common Lupus symptoms. These were actually the symptoms that helped my rheumatologist determine my diagnosis.

Then I figured out the changes diet and lifestyle that worked for me. And for 10 years, my flares and symptoms have been in remission!

If I could go back and talk to my newly-diagnosed self, here's what I would want to know.

Building Your Medical Team

One of the most important things you can do is find a doctor who truly listens to you and specializes in autoimmune conditions. A good rheumatologist doesn't just treat your symptoms—they partner with you in managing your health and are concerned about more than just the labs. Don't be afraid to seek a second opinion if you feel unheard or dismissed. You deserve a healthcare provider who takes your concerns seriously, explains things clearly, and works with you to create a treatment plan that fits your life. This relationship will be foundational to your wellness journey, so it's worth taking the time to find the right fit.

Understanding Food and Inflammation

I remember the first time I learned about foods that can cause inflammation or act as triggers. I thought I had a good handle on nutrition until I started diving into the research. Suddenly, I realized there was so much more to learn about anti-inflammatory eating and how it could impact my lupus symptoms.

Here's what I discovered about food and inflammation:

Common Inflammatory Triggers: Certain foods tend to promote inflammation in many people. These can include gluten, dairy, refined grains, soy, and sugar. Surprisingly, even some seemingly healthy foods like tomatoes, peppers, and other nightshade vegetables can be problematic for some individuals.

Your Triggers Are Unique: This is so important to understand! What affects me might not affect you, and vice versa. Everyone's body responds differently, so paying attention to how YOU feel after eating certain foods is crucial. Keeping a food journal can be incredibly helpful in identifying your personal triggers.

It's Not Just About Lupus: These dietary considerations apply to ALL autoimmune diseases, not just lupus. If you have multiple autoimmune conditions or know others who do, this information can be valuable across the board.

Hidden Culprits: Don't forget about food dyes and preservatives! These additives can also trigger inflammation in some people, so reading labels becomes an important habit to develop.

Lifestyle Factors That Matter

Beyond food, I've learned that managing lupus means taking a holistic approach to wellness:

Sleep Is Everything: I cannot stress this enough! Quality sleep isn't a luxury—it's a necessity for managing lupus. Your body needs adequate rest to repair, heal, and keep inflammation in check. Prioritize your sleep schedule and create a restful bedtime routine.

Stress Management Is Non-Negotiable: Reducing stress and avoiding burnout has been one of my biggest lessons. If you push yourself too hard day after day, your body will eventually demand rest—usually at the worst possible time. I've learned this the hard way! Building in rest days, practicing mindfulness, and setting boundaries are all essential practices.

Sun Protection Matters: Photosensitivity is real for many of us with lupus. Too much sun exposure can trigger a flare faster than almost anything else. Invest in good sunscreen, protective clothing, hats, and sunglasses. It's not about avoiding life—it's about living it smartly.

The Power of Community and Support

Perhaps the most important and life-saving discovery has been understanding that I don't have to navigate this alone.

Share Your Diagnosis Thoughtfully: When you're ready, consider opening up to close friends and family members who you trust to be supportive. You don't owe everyone an explanation, but having a circle of people who understand what you're going through can make all the difference. The right people will want to learn about lupus, will check in on you during flares, and will celebrate your good days with you.

Find Your People: Whether it's friends, family members, support groups, or professionals like me (The Lupus Dietitian!), surround yourself with people who genuinely want to support your journey. These connections can provide practical advice, emotional encouragement, and the reminder that you're not alone in this.

Professional Support Matters: Don't hesitate to reach out for specialized help. Working with a dietitian who understands autoimmune conditions, a therapist who can help you process your diagnosis, or joining a lupus support group can provide invaluable guidance and community.

Treat Yourself with Kindness and Grace

This might be the most important lesson of all. Living with lupus requires patience—with your body, with the learning curve, with the unpredictability of flares, and most importantly, with yourself.

Some days you'll feel great and can tackle everything on your to-do list. Other days, getting out of bed will be your biggest accomplishment. Both kinds of days are valid. Both kinds of days require you to treat yourself with compassion.

You're not lazy when you need rest. You're not weak when you ask for help. You're not being difficult when you advocate for your needs. You're managing a complex chronic illness, and that takes courage and strength every single day.

Be patient with yourself as you learn what works for your body. Celebrate small victories.

Forgive yourself when things don't go as planned. Adjust your expectations when needed. And remember that taking care of yourself isn't selfish—it's essential.

Moving Forward with Hope

Getting diagnosed with lupus was undoubtedly life-changing, but it doesn't have to define your entire life story. With the right support, knowledge, and self-compassion, you can build a fulfilling life while managing your condition.

Every person's lupus journey is different, and what works for someone else might not work for you—and that's okay. Keep learning, keep listening to your body, and keep surrounding yourself with people and resources that lift you up.

Have a wonderful day, everyone! Remember, you're stronger than you know, and you don't have to figure this all out alone.

If you're interested in more personalized support and guidance, I'd love to connect with you! Reach out for a free meet-and-greet call, and let's explore how we can work together to help you thrive with lupus.

Schedule your FREE 15-minute Discovery Call with me HERE