The Mighty Logo

What Life With Lupus Is to Me

The most helpful emails in health
Browse our free newsletters

Mid-conversation, I’m often asked questions that lead to me revealing information the other person isn’t ready to hear about. It involves an unsettling, controversial word. Actually, it’s not just a simple word, but a name: lupus. And then comes an all-important question I hear time and time again.

What is lupus?

That’s a great question! However, the answer depends on how much you want to know.

The Mayo Clinic defines lupus as “a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.”

If you were to ask a doctor or nurse what the disease is, you would get a similar definition. That’s what lupus is from a medical lens, but a 38-word summary doesn’t do my disease justice. That’s not what lupus is to me.

Lupus is an ever-evolving list of medications and pills, all with strange names thought up in a lab. It’s the prick of needles for blood tests and peeing into a tiny plastic container — sadly all-too-familiar routines. It’s the sound of Velcro ripping on and off as nurses check my blood pressure. It’s sitting in the musty waiting room of the old nephrology unit surrounded by people 40 years my senior staring at me while wondering why someone so young is in their company.

Lupus is learning to accept that I have unresolvable rage. I’m not a fundamentally angry person, but there’s a part of me that probably will be forever furious about having lupus. I’ve long been accepting of the fact that I have it, and yet I can’t help begging the universe to tell me what exactly it I did wrong. I’m not usually one for wallowing in self-pity, but in dark moments I can’t help but ponder the question, “Why me?”

Lupus is mentally beating myself when I can’t get out of bed, which only makes me more tired. It’s a vicious cycle!

Lupus is having an overwhelming love for a body I also sometimes struggle not to hate. It’s remembering that while parts of me are self-destructive, the majority is doing absolutely everything it can to keep me alive. It’s feeling my pulse and experiencing tear-jerking gratitude for a heart with unfaltering allegiance to me. That little engine of mine has always kept fighting; she has always beat for me and only me.

Lupus is getting ink put in my skin to remind me of exactly where I came from and where I’m heading. It’s getting up each morning to look at the tattoos on my body knowing they may speak of struggle, but they shout perseverance and victory. It’s seeing the Venus de Milo on my right arm and remembering that beauty is perception, self-love is a much-needed gift, and that I too am a beautiful creation. It’s admiring the detail in the wolf on the inside of my left bicep and remembering I have overcome this disease time and time again — today is not the day to back down.

Lupus is the disease that has tried to ruin my life many a time. It’s the reason I get up every day, hands balled, fists up and ready to fight. Lupus is simultaneously the worst thing that’s ever happened to me and the reason I live my best life.

Lupus is a battle I won’t ever win, but it’s still worth fighting. It’s waking up every day knowing that I already know what the most dangerous thing in my life will be. I carry it with me everywhere I go in life.

What is lupus to you?


Originally published: July 1, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home