08/26/2026
Me and Lupus
Lupus.
It’s a word people have heard, but very few truly understand what it means to live with it.
Me and lupus? We have a complicated relationship.
There are the physical challenges, but there are mental and emotional ones too. There is the isolation. The exhaustion. The struggle to keep fighting when you are already mentally and physically fatigued.
There is the pain you cannot explain because sometimes you don’t even understand it yourself.
There are days when my feet hurt so badly that walking becomes a task. Days when my joints and body ache. Rashes that appear without warning. Sunlight that doesn’t simply feel warm against my skin—it can burn and trigger symptoms.
Then there’s the weight gain. Or the weight loss. The positive ANA. The abnormal test results. The additional tests. The waiting. The fear.
Could this be something else? Could it be cancer? Is lupus attacking another part of my body?
Sometimes you don’t know what lupus is doing to your body, and that uncertainty can be terrifying.
Then comes the brain fog.
Imagine knowing that you know something but being unable to retrieve it from your own mind. Forgetting simple things. Losing your train of thought in the middle of a sentence. Walking into a room and forgetting why you’re there. Searching for words that once came easily.
And then there are the heart palpitations.
Your heart begins racing or beating differently, and for a moment you wonder:
Is this lupus? Is this anxiety? Or am I in real medical danger?
That uncertainty is something people don’t talk about enough.
Neither is the insomnia.
How do you explain being completely exhausted but unable to sleep because your body hurts? How do you explain waking up tired when you barely slept in the first place, then being expected to function as though nothing is wrong?
But some of the deepest wounds of lupus aren’t physical.
They’re relational.
I’ve learned that chronic illness can change friendships, family relationships and even the way people see you.
People disappear.
Some become tired of hearing that you don’t feel well. Some offer sympathy that feels rehearsed instead of genuine. Others question whether you’re really as sick as you say you are.
“You don’t look sick.”
“It can’t be that bad.”
“You’re exaggerating.”
And perhaps one of the most painful accusations:
“You’re faking.”
There is a particular kind of loneliness that comes from fighting something inside your own body while simultaneously feeling like you have to prove to other people that the fight is real.
I shouldn’t have to perform sickness for my pain to be believed.
I shouldn’t have to look sick enough for someone to show compassion.
I shouldn’t have to explain every symptom for someone to understand that sometimes I simply do not have anything left to give.
Living with lupus has taught me that illness doesn’t only affect the body. It can touch your confidence, independence, relationships, memory, emotions and sense of safety within your own body.
And still, I fight.
Not because I’m never tired.
I fight while I’m tired.
I keep moving while hurting.
I keep showing up while carrying things most people will never see.
So when you see someone living with lupus—or any invisible chronic illness—understand that you may only be seeing the smallest part of their battle.
Behind the makeup may be a rash.
Behind the smile may be pain.
Behind the forgotten word may be brain fog.
Behind the canceled plans may be exhaustion.
Behind “I’m okay” may be someone simply trying to make it through another day.
Lupus can be silent.
But those of us living with it should never have to be.
This is lupus.
This is my reality.
This is me and lupus.
