Living with lupus is a constant battle, but it’s a battle that I’ve learned to manage with strength, resilience, and hope. Today, I want to share my journey with lupus - the challenges I’ve faced, the lessons I’ve learned, and the ways I’ve managed to find balance and purpose besides having a chronic illness. I hope my story will inspire others going through similar experiences, and remind them that they are not alone.

Discovering My Lupus Diagnosis

My journey with lupus began when I started experiencing unusual and persistent symptoms that I couldn’t explain. Extreme fatigue, joint pain, and unexplained rashes became part of my daily life. After countless doctor visits and tests, I was finally diagnosed with systemic lupus erythematosus (SLE). The diagnosis was overwhelming - lupus is a chronic illness with no cure (not yet!), and the thought of managing it for the rest of my life was daunting. Also, I replayed in my head, Dr. House’s famous saying “It’s not lupus”.

At first, I didn’t know what to expect. The unpredictability of lupus meant that my health could change from day to day, and I struggled with accepting the limitations it imposed on my life. However, over time, I realized that although lupus would always be part of me, it didn’t have to define me.

Facing the Challenges

One of the most significant challenges of living with lupus is learning how to manage the unpredictability of the illness. There are good days and there are bad days. There are days when I feel strong and capable, and this is when I usually overdo it. And there are days when even getting out of bed feels impossible. Managing the physical symptoms of lupus has been tough, but it’s the emotional challenges that have been equally, if not more, difficult to overcome.

At times, the isolation and frustration of not being able to live life as freely as I wanted were overwhelming. I had to find new ways to care for myself physically, mentally, and emotionally. Setting boundaries, learning to accept help, and practicing self-compassion became crucial parts of my journey.

Finding Strength in Self-Care

One of the most important lessons I’ve learned as a lupus warrior is the power of self-care. For me, self-care isn’t just about taking time to rest. Self-care is about actively managing my health and making choices that support my well-being. This includes having a balanced diet, including gentle exercise like yoga, and prioritizing rest when my body needs it.

Mindfulness practices, such as meditation and mindful walking, have also been essential in managing the emotional ups and downs of living with lupus. Taking time each day to slow down, reflect, and be present helps me cope with stress and stay grounded, even during flare-ups.

The Importance of Community

Another crucial aspect of my lupus journey has been connecting with others who understand what I’m going through. Being part of the lupus community has given me a sense of belonging and provided a space to share my experiences, learn from others, and offer support in return. Knowing that I’m not alone in this fight has been empowering.

Through my advocacy work and online platforms, I’ve had the privilege of sharing my story and connecting with fellow lupus warriors from all walks of life. The strength and resilience I’ve witnessed in this community inspire me daily and remind me of the importance of raising awareness about lupus and supporting one another.

My Advice for Fellow Lupus Warriors

If there’s one thing I’ve learned on this journey, it’s that we are stronger than we think. Living with lupus requires a lot of adjustments, but it also teaches us resilience, adaptability, and patience. Here are a few pieces of advice I’d like to share with anyone who is living with lupus:

• Listen to your body: Learning to recognize the signals your body is sending you is key. Rest when you need to, and don’t be afraid to set boundaries with others to prioritize your health.

• Find your support system: Whether it’s family, friends, or a lupus support group, having a network of people who understand and care about you is invaluable. Don’t hesitate to lean on them when things get tough.

• Stay informed: Lupus is a complex illness, and staying informed about your condition empowers you to take control of your health. Learn as much as you can, and work closely with your healthcare team to manage your symptoms.

• Practice self-compassion: Be kind to yourself. There will be hard days, but it’s important to give yourself grace and understand that you are doing the best you can.

• Embrace the good days: On the days when you feel good, embrace them fully. Celebrate the small wins, and use them as motivation to keep moving forward.

Looking Ahead 

While lupus is a lifelong condition, I’ve learned that it doesn’t have to hold me back. It’s taught me to slow down, listen to my body, and focus on what truly matters. Through my writing and advocacy, I hope to continue raising awareness about lupus and supporting others on their journey.

To all the lupus warriors out there, remember that you are not alone. We are in this together, and together, we can overcome the challenges that lupus presents. Stay strong, stay hopeful, and keep fighting!

Do you want to read more about the methods and techniques I’ve tried to help me manage my lupus?

In my self-help book, "Say Hello to My Friend Lupus", I share my journey, along with some practical tips and techniques that have helped me in this ongoing fight. From managing symptoms to finding strength during challenging moments, I created this book to inspire and support fellow lupus warriors.

Get your copy today and discover how you too can take control and thrive with lupus. Together, we are stronger!

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