What It’s Like To Run With Lupus

Personally, running isn’t the easiest activity I could be doing. In fact, getting up at the crack of dawn on a near daily basis, to pound the pavement or trail or treadmill. I choose to run. Running has chosen me and most times I oblige.

In a recent post on my blog, I talked about how when the going gets tough in long distance events, the tough start talking to themselves in mantras.

Mantras are amazing, but they don’t work all the time. Sometimes, it’s too physically and mentally exhausting to move my mouth. Sometimes I can’t even breathe. Sometimes it’s painful to move my mouth, since it’s likely I’ve probably been grimacing and frowning through much of the event.

The mind is what is left.

At this point I start thinking of people who have helped me on my running journey, people who have passed on, and friends and family living with illness and chronic illness. This always puts my run and my momentary struggles into perspective. I am out here running. This is a privilege. I am running for those who could not and cannot. I am running for those who are in so much pain, that it is impossible for them to run today. I am running for those who want to be out here today, but must not.

I have the privilege of running when I want, for how long I want or need, and where I want. This is not everyone’s reality.

You know that meme that seems to be popular on all social media—YOUR EXCUSE IS INVALID—typically paired with a photo of someone that has a visibly obvious physical ailment/disability? I hate it. While I believe the intention of the meme is to motivate those of us who wouldn’t work out for a get-over-yourself-it’s-not-that-serious-kind-of-excuse, the impact of the meme can be hurtful and judgmental to some. I’m speaking of those who are suffering through illness/chronic illness, which manifests itself irregularly, without warning, often severely and many times is debilitating.

On a run a few days ago, I wasn’t feeling it. My body was hurting. I was tired. I was uninspired. I wanted out of the run. But then I thought about friend who has to deal with times when she can’t run, because of her illness. That set my thinking straight. That day, I ran for her.

My ebullient and witty friend and running/racing buddy Crystal, was diagnosed with lupus in March of 2014. A long-time runner and fitness enthusiast, Crystal was both relieved and horrified when she finally found out what had been causing her such a vast array of health issues throughout the previous 16 years.

Lupus is an autoimmune disease that can attack and damage any part of the body, from skin to organs inside the body. It is a disease that attacks women between the ages of 15-44, although it can strike men and children.

Crystal’s lupus is primarily in her joints, hands and feet, and hips. When she is having a flare up, she can barely hold a hairbrush because of the intense pain and swelling that the disease causes. Just this year, she has also started to have skin pain and renal issues.

Despite her diagnosis and flare-ups Crystal continues to run and keep a pretty busy training and racing schedule, in addition to her travel-heavy career in drug compliance.

In fact, just a few weeks ago she finished the Chicago marathon, her first. I followed her journey and frequent updates on Facebook, and was overjoyed when she was finished.

I’m so proud of Crystal and I wanted to share a little bit of her story with you. When you’re having a bad running day, think of someone who may not have the chance to run. And then finish what you started.

How long have you been at it?

Crystal: “I ran in high school, I was NOT good at it but I really liked it. I went away from it for a few years then I really started getting into 5k’s about 8 years ago; I would do one nearly every weekend locally. Distance running started in 2013 when I did my first half marathon. [Running] gave me a healthy way to manage my stress and learn more about myself, who I am and what I am capable of in this life.”

How does having Lupus affect your running?

Crystal: “I have to be extraordinarily careful with temperatures. I get what’s called Raynaud’s phenomena in my hands and feet if I get too cold or my body gets too stressed. I have had to sit out 1 race so far because I was having a flare that caused pins and needles from my knees down. It wasn’t worth the risk to me or other runners for me to be on the trail with limited sensation in my feet.”

How do you modify your training when you have a flare up?

Crystal: “If my feet are affected I have to just park it and rest. Otherwise, I just run late at night or early in the morning to avoid peak sunlight. I’ve recently discovered there are a lot of clothes and products available with sun protection to help on race day if I’m going to be in the sun. I have flares more in late winter/early spring. This is unfortunately my personal running season as I don’t do well in heat.”

Does running help with pain or hinder your recovery and remission process?

Crystal: “I find if I stick to training as much as possible I am in a better space mentally, stress is a big trigger for my flares, so good mental space is essential. I don’t think it helps with any pain I am in during a flare other than being in a happy space mentally and I feel that helps me recover from the flare faster.”

Do you use running as an outlet? Emotionally? Physically?

Crystal: “Both! If I am having a day, good bad or indifferent, there’s nothing a couple of miles can’t improve emotionally or physically. I can relax on a trail run and kind of forget about everything else, even for a minute, it’s priceless when managing an autoimmune disease.”

How does running make you feel?

Crystal: “Free from everything in the world, including my own mental “chains”. It’s also a constant reminder of how small I am in this universe and how magical this world really is.”

If you’d like to learn more about lupus and exercise, The Lupus Foundation of America is a great place to start at www.lupus.org.

Read More About Running For Others:
Runner Honors Father, Raises Thousands For Charity
How Do I Raise Money For Charity While Also Training For A Race?