WAIT… LUPUS CAN DO THAT?™
- Nyobie Gordon-Ricks
- 3 hours ago
- 4 min read
An AZ Butterfly Warriors Educational Series
Lupus isn't always visible. Let's talk about what you may not see.
You see someone smiling in a photo.
They went to work today. Maybe they ran errands, met a friend for lunch, picked up their
kids, or posted a picture on social media.
They look good.
They look happy.
They look… fine.
But here's the thing:
Looking fine and feeling fine are two very different things.
For many people living with lupus, some of the hardest parts of the disease are the things other people can't see.
Welcome to WAIT… LUPUS CAN DO THAT?™, an AZ Butterfly Warriors educational series where we go Beyond the Visible to explore the surprising, misunderstood and often unseen ways lupus can affect the body and everyday life.
No medical degree required.
We're talking about lupus in language everyone can understand.
😳 THE WAIT… WHAT?
Wait… someone can have lupus, look completely fine and still be struggling?
Yes.
Lupus is a chronic autoimmune disease. That means the immune system—which is supposed to help protect the body from infection and disease—mistakenly attacks the body's own tissues.
That can cause inflammation and, in some cases, tissue or organ damage. Lupus can affect many areas of the body, including the skin, joints, kidneys, heart, lungs, blood cells and brain.
Some effects of lupus are visible.
A rash may be visible. Hair loss may be noticeable. Joint swelling might be something another person can see.
But lupus can also cause symptoms that aren't obvious from the outside.
That's where things get complicated.
🤔 BUT WHY?
There isn't one universal version of lupus.
One person may experience a particular group of symptoms while another person experiences something completely different.
Symptoms can also come and go, change over time, and range from mild to severe. Periods when lupus becomes more active are commonly called flares.
Here's another important distinction.
A symptom is something a person experiences.
A sign is something that can be observed or measured.
For example, pain and fatigue can be very real symptoms even though another person can't see or directly measure what that individual is feeling. Meanwhile, certain laboratory findings can reveal signs of disease activity even when the person isn't experiencing an obvious symptom.
In other words:
You can't determine what's happening inside someone's body simply by looking at them.
👀 WHAT YOU MAY NOT SEE
Someone with lupus might be dealing with:
Fatigue that makes ordinary daily activities difficult.
Joint or muscle pain that isn't obvious to anyone else.
Brain fog, which can include difficulty concentrating, remembering things, multitasking or finding the right words.
Internal organ involvement that may require medical monitoring even though there is little or nothing visibly different about the person.
Or several of these things at the same time.
The Lupus Foundation of America reports that extreme fatigue affects many people with lupus and can interfere with everyday activities such as working, attending school or even taking a shower.
That's why a picture can be misleading.
A smile doesn't show you someone's pain level.
Makeup doesn't show you someone's fatigue.
Going to work doesn't tell you how much energy it took to get there.
And one good day doesn't tell you what yesterday—or tomorrow—looks like.
💜 WARRIOR TO WORLD
There's a sentence many people living with invisible illness know very well:
“But you don't look sick.”
Most of the time, the person saying it probably isn't trying to be hurtful.
They may even think they're giving a compliment.
But imagine hearing that after you've spent the day managing pain, fatigue, appointments, medications, brain fog or symptoms nobody around you can see.
The Lupus Foundation of America specifically addresses this experience, noting that a person can look like themselves while still experiencing joint pain, fatigue or other problems that aren't visible.
So perhaps we change the question.
Instead of:
“But you look fine!”
Try:
“How are you feeling today?”
And then—this part matters—
listen to the answer.
You don't have to completely understand what another person is experiencing to believe them.
Sometimes support begins simply by recognizing that what you can see isn't the whole story.
🦋 THE BUTTERFLY BOTTOM LINE
If you remember nothing else from this article, remember these four things:
1. Lupus doesn't look the same for everyone.
2. Some lupus symptoms aren't visible to other people.
3. Lupus symptoms can come and go and change over time.
4. Looking well doesn't necessarily mean feeling well.
Lupus asks us to look beyond appearances.
Or, as we say at AZ Butterfly Warriors:
Beyond the Visible.
Because sometimes the most important part of someone's story is the part you can't see.
NOW YOU KNOW.🦋
The next time someone says they have lupus, remember:
You don't have to see it for it to be real.
And now that you know, help someone else understand.
Share this article with someone who might say:
“WAIT… lupus can do that?”
AZ Butterfly Warriors
Arizona is home. Lupus awareness has no borders.
About WAIT… LUPUS CAN DO THAT?™
WAIT… LUPUS CAN DO THAT?™ is an AZ Butterfly Warriors educational series that goes Beyond the Visible to explore the surprising, misunderstood and often unseen ways lupus can affect the body and everyday life—explained in language everyone can understand.
Medical Information Disclaimer
This content is provided for educational and awareness purposes and is not intended as medical advice, diagnosis or treatment. Lupus affects people differently. Talk with a qualified healthcare professional about questions or concerns regarding your individual health, symptoms or treatment.
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