What does lupus mean to me?

For me, lupus was first and foremost an ANSWER after numerous tests and a lengthy hospital stay. I spent eight hellish days lying in a hospital bed scared that I would die.

It then meant RELIEF; I finally had a name to put to everything I had been feeling.
However, it also brought with it FEAR. Fear of what my life would look like now. And with that
fear came numerous questions. How was I going to approach my life now? What was my next step going to be?

The only answer I came up with was FORWARD!

I am seven years into this journey and truly, that is the best way to describe it, a journey. Lupus is often a roller coaster of pain, fatigue, social isolation, sometimes sadness, and changing, unpredictable symptoms.

It is also STRENGTH. I have gained strength in myself, strength of character that I didn't even know was possible. I have the strength to push through the pain that once scared me. Strength to face each day as if it is my last so I can live it to the fullest.

It is KNOWLEDGE. Newfound knowledge of myself, and what I am made of. It is like unlocking a new level of me. I have gained medical knowledge of this disease, the ins and the outs.

It is BRAVERY. Every time a new symptom, scare, or test shows up, I can face it head on, certain that I will persevere.

It is ACCEPTANCE. I have accepted this as just another facet of my life. It is an accessory.

It means COURAGE. Courage to get up every day. To wake up and smile. To take a deep breath and step forward, one foot in front of the other. It Is HOPE. Hope for better days, better treatments, and hope for living my best life with the best me.

It is also LOVE. I now show love to myself. I make time for myself that, had I not gotten sick, I would have used elsewhere. Lupus has reminded me that I am important too. I have learned to take care of me so that I can take care of others. And it is ok for me to do that!

Lupus does indeed take from us, but having it is not the end of a chapter, it is the start of a new one. One that I CHOOSE how it goes.

This is what lupus means to me.

This article was written by MyLupusTeam member Calli as part of the Member Spotlight series. Calli is a paraeducator and a mom to four grown boys. She enjoys relaxing and binge-watching “Gilmore Girls.”

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