Running a Marathon with Lupus: Pushing Limits with Strength and Support

On November 3rd, I ran the New York City Marathon. It was difficult, extraordinary, emotional and painful – not in the least because it was almost 3 years to the day that I got diagnosed with lupus.
I’d argue that running a marathon is an extraordinary accomplishment for anyone, but as someone with lupus it came with different challenges, thinking and planning from most of my peers winding their ways through the five boroughs.

I faced unique hurdles in planning and executing this journey. While other runners focused on endurance and pacing, I had to consider how to manage my lupus symptoms, particularly joint pain and fatigue, over the 26.2-mile course. But that’s what we manage every day with lupus - the push and pull of what we want to do with what our body is allowing us. But, through this experience, I learned that with the right approach, mindset, and support, you can cross any finish line. Your marathon could be 26.2 miles, but it could also be any goal that you have - from opening up to somebody about having lupus to incorporating new healthy habits to better manage your lupus.

I hope sharing the three key things that helped me cross the marathon finish line will inspire the next person to approach their goals with the right mindset, planning and supporters by your side

1. Listening to Your Body: The Golden Rule

As all lupus warriors know, listening to your body is more than just good advice—it’s essential. Because lupus symptoms can vary significantly from day to day, paying attention to physical cues is critical. For me, this became the essential backbone of my training plan.

When I started to train I had a set schedule of short and long runs, and thought that I knew exactly what my pace was going to be every run. I very soon realized that that’s not how my body works, and instead had to become flexible with training. Although I didn’t like falling behind on my set program, I knew if I pushed too hard, I was never going to make it to race day.

On days where I was feeling on top of the world, I kept a brisk pace and blasted music on runs. On days where I woke up with stiff joints and deep exhaustion, I would take long walks or rest if I needed. This flexibility and attentiveness to my body was challenging as it felt counter-intuitive, but without it I would never have made it to the start line – let alone the finish line.

Long-distance training can be grueling, but pushing through pain is not the goal here; instead, the goal is to work with your body. Now on the other side of the race I feel more connected to my body than ever, and it’s not because it did what I wanted on race day. It’s because in the months leading up to race day, there were many days where it didn’t do what I wanted, and I learned to accept that.

2. The Power of a Support System

Just like in everyday life, having a solid support system makes all the difference when preparing for a marathon with lupus – and mine is nothing short of spectacular. From family and friends to fellow runners and healthcare providers, a support network provides the encouragement and guidance needed to stay on track.

As part of my marathon plan, I knew I was going to be running alongside my brother-in-law, someone who has been a source of fun and support since I met him. Although we live in different parts of the world, having him as a training and running partner made all the difference. Running next to someone who understood that my path to 26.2 miles might ebb and flow meant the world to me. And it also meant that I had the proper support to get me through the highs and lows of running for six hours straight.

But training for the marathon extends outside those you physically run with to include your doctors and cheerleaders. Healthcare professionals, like physical therapists and rheumatologists, were vital in helping me manage symptoms and create a training plan that worked with, rather than against, my lupus.

And my family and friends constantly gave me support, which is an underrated part of the marathon experience. More than just cheering for me on the day, they made sure to check in consistently in the months leading up to the marathon, making sure I knew that even if I didn’t end up going the full distance they were proud of me for trying.

Sharing my goals and challenges with loved ones made the journey feel less isolating, which can often be the case when you have an invisible chronic illness. Lupus may be an illness that I have, but it has an impact on all of those around me too. And although I ran the marathon, it was my whole support group that shares in that accomplishment.

3. Embracing the Challenge: Mind Over Matter

Running a marathon with lupus is hard—there’s no question about it. Running a marathon at all is difficult. People living with lupus know firsthand what it means to be tough. We’ve faced many physical and mental hurdles already, usually spending years dealing with doctors and unknowns before we are diagnosed. And although the four years it took for me to learn about my lupus were exhausting, they also built resilience.

That same resilience drove me through marathon training. It may seem silly to compare a chronic illness diagnosis that was four years in the making to spending a day running around New York, but they capture the same mentality: it’s our mental fortitude that can get us through the ebbs and flows of life. 

I felt that way in December of 2021 when I was diagnosed. And I certainly felt that way on miles 20 to 23 of the marathon.

That’s not to say mind over matter always works. I know first-hand that with my lupus, sometimes my mind doesn’t count at all when it comes to what my body needs. But my resilience got me through – both my diagnosis and my marathon experience.

4. Finishing Strong

For me, crossing the marathon finish line was more than just completing a race. It was a testament to my determination, the strength of my incredible support system, and the respect I have for listening to my body.

Although I may never run another marathon (I definitely won’t), my hope is that my marathon experience lives on, and that it lives on in anyone who decides to push the limits of the boundaries set around them.

Taking on a marathon with lupus was a reminder for me of the power within each of us and within each step we take – and there most certainly is power in each step we take as lupus warriors.

Authored by:
Molly Susman