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Providing Answers, Support and Hope in Delaware, New Jersey and Pennsylvania

This is my chapter   |   

Brionna's Story

I’m not done writing my lupus story.

I was diagnosed 5 years ago, in March; which is pretty crazy to me. Some days it feels like just yesterday I was able to wake up energized and run six miles, no pain, no fatigue. Then 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 isn’t relaxing, or refreshing, 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. After a weekend or weekday activity I’m like the postal service, I need 5-7 business days to recover.

brionna marks

"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.

Anxious that you will lose all your friends, your job, your money, your dreams, that you aren’t worthy to be loved. Depressed about your health because Lupus is so unpredictable. Depressed you cannot do what other people your age are doing, mourning the life/body you used to have. Mourning the future you fought so hard for and now you it’s slowly being ripped away and you feel helpless.

We’re sharing our stories and making Lupus visible this May, because our stories matter. Stories of the past and how we got here are important, but how you write your story now is up to you and the future of your story is still unwritten! 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 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. 💜

**I encourage you to reach out to a doctor, friend, therapist/counselor if you’re feeling anxious or depressed.**