Read Brionna Marks inspiring journey as she shares her 6-year battle with lupus. Discover how she navigates the daily challenges of pain, fatigue, and mental health, and why she became an advocate. Join her in the fight against lupus by participating in this year’s walk and help put the ‘US’ in Lupus.

I was diagnosed 6 years ago. Some days it feels like just yesterday I was able to wake up energized and run six miles, no pain, no fatigue. Other days it feels like a lifetime ago, and I can’t remember a day I wasn’t in pain. Now I need to rest after cutting vegetables. Going up or down stairs is tiring and painful. I dread taking a shower - it’s exhausting.

I have to plan out my weeks, plan rest days, plan house work, laundry, grocery shopping etc., but when a flare comes that all goes to waste! Or I’m feeling “okay” and over do it with activities or housework and then I regret it immediately.

Lupus is a constant battle between I need to rest and I want to have a life! 

The pain and fatigue of Lupus is terrible. There are days where the pain it’s unbearable and relentless. The fatigue seems endless. There have been countless days/nights where I just lay in bed and cry. While you may see me using a cane as a mobility aid or visibly appear tired what you cannot see is the constant battle of depression and anxiety.

I hope one day all of our stories will say, “I used to have Lupus”. For now though we’re putting the ‘US’ in Lupus so no one has to feel unheard, or unseen anymore. 

I became an Advocate because I struggle with anxiety and depression and I know how hard it is being isolated and betrayed by your own body.  I’m not the best at sharing my feelings or emotions out loud, but I can always express myself in my writing. I’m sharing my story so that no one feels like they have to struggle alone anymore.

I am more than my lupus and so are you! This is just the beginnings of our stories.

Brionna Marks - Mechanicsburg, PA