“There are things I have to do that are hard to imagine my peers doing. Frequent lab work and speciality visits. Trips to the pharmacy for refills. Filling out my pill container for the week. Then there are the more intimate worries: do I feel sick because I didn’t get enough sleep? Why do my hands feel so weak at times?
Living with Lupus has come to mean living with a set of invisible mental & emotional tasks. This is perhaps the most frustrating part because this is what I wished others understood more. I know that Lupus is a part of me so in a way it is hard to feel like others fully see me if they do not understand these invisible tasks. Often I feel pressured to present myself a certain way – the confident, smart, friendly me. There are times when it’s difficult to back out of plans or don’t not do them in the first place because I need downtime. I feel like I should be this lively, energetic and outgoing adult like the rest of my peers appear to me, but I always have to put my health and well being first.
The journey to diagnosis was confusing and unyielding. No one in my family had ever experienced something similar and I hit many dead ends over the course of a year and half. However, I never lost hope and I kept advocating for myself. I took a massive blood clot occluding blood flow to my arms that led to my hospitalization. To this day I wonder how different my life would’ve been if that clot made its way to my brain. Overall, living with Lupus has taught me about acceptance and perseverance. I feel like my sights are constantly aimed at the future because I have to convince myself that I will continue to make it through.
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Running is my superpower. I’ve never considered it a coping mechanism because I found a way out of the Lupus cloud by running. The act of slowly taking my body back and CHOOSING to do something that causes (temporary) pain and discomfort feels like the perfect metaphor against something unwillingly chosen like Lupus. I also run to show that a diagnosis doesn’t have to mean the end of your dreams or your athletic careers. Running is a form of advocacy, a way to find community, to challenge yourself, and more! I love it so much I became a coach so that I could help other autoimmune athletes find their path back to running.
I’ve had some hiccups over the past couple of years. Once I was in remission a handful of years ago, I turned to running to help build healthy habits. I enjoyed many years without a major flare until 2022 when I learned that Lupus could rear its ugly head at any point through my life. I felt loss because once again the one thing I loved that helped me manage the most was lost. Running became a struggle but I focused on what I could still do instead of what I was missing. I’m happy to say that I am finally starting to feel like myself again and at the moment I am motivated to chase new fast times and to expand my capacity for adventure. I can’t wait to see what the year has in store for me.”
Mireille
