“But you don’t look sick!”
I hear this too often.
Instead of smiling one more time without knowing how to respond, especially during this current flare…I am sharing this in the hope that those who truly want to understand what I — and millions of others live with, will pause to read and learn about Lupus.
For nearly six years after my last serious flare, I did not take Plaquenil or Prednisone. But in September 2025, just as I began a new school year as a Reading Specialist, I was struck with severe swelling in my legs and hands, systemic pain, and an inability to move my body naturally. I had to return to conventional SLE treatment.
And that familiar statement — “But you don’t look sick.”
It’s understandable. Lupus is often called the “invisible disease” because its most debilitating symptoms are internal. A person living with lupus may appear healthy on the outside while experiencing severe pain, inflammation, or even organ involvement internally.
Unless you have lived it, it is hard to describe.
For me, it feels like sharp, burning pain from my jaw to my feet — systemic and relentless — accompanied by joint swelling, muscle and bone throbbing, profound fatigue, and brain fog that makes even simple thoughts feel heavy.
This is my journey with Systemic Lupus Erythematosus (SLE).
“SLE is often referred to as “the disease with a thousand faces” because symptoms vary widely from person to person and can change over time. It is unpredictable — marked by flares (when symptoms worsen) and remissions (when symptoms improve) — with no set pattern.”
Lupus can present as:
- A butterfly-shaped facial rash
- Joint swelling and bone pain
- Muscle spasms
- Debilitating systemic pain
- Extreme fatigue
- Brain fog
Symptoms range from mild to life-threatening and may affect the kidneys, heart, lungs, or other organs. Thankfully, after extensive bloodwork and evaluation, my rheumatologist confirms that my organs remain healthy.
But much of Lupus remains unseen.
Why Lupus Is Called “Invisible”
- Internal Symptoms: Extreme fatigue, joint pain, headaches, and cognitive changes often leave no outward physical signs.
- Hidden Organ Impact: The immune system may attack internal organs without visible changes to appearance.
- Fluctuating Nature: One day I may look “fine.” The next, I may be unable to get out of bed.
Because it cannot always be seen, Lupus is often misunderstood.
The invisible nature of this disease can lead to skepticism and isolation. Sometimes I am too exhausted to explain why I need extra rest, why I avoid prolonged sunlight, or why I must cancel plans at the last minute. Complete rest — paired with short, gentle walks at my own pace — is often essential to calm inflammation while reminding my body that we must keep moving.
Research also shows higher rates of anxiety and depression among Lupus patients, often compounded by the feeling that their struggle is unacknowledged, and that others may not “want to see” what they see out of fear and being uninformed.
I am a strong woman. But when someone dismisses what is happening during a flare, it can hurt more deeply than the physical symptoms themselves.
What helps?
A simple “Thinking of you.”
A phone call.
A visit.
A cup of coffee placed gently in my hand with a loving gesture of friendship.
That is priceless.
I am not invisible.
I live with a chronic autoimmune disease that is.
I want to be met exactly where I am — not where I appear to be.
I am Wendy.
The mom.
The grandma.
The friend.
The sister.
The teacher.
The Integrative Nutrition Health Coach and Practitioner…
A kind and caring soul…who always “sees” you…and…
Who sometimes just needs a little extra tenderness during a flare — when it is frightening, painful, and unpredictable.
If you would like to learn more about lupus, how it affects millions of people, and how you can better support someone living with this invisible illness, please visit Lupus Foundation of America at Lupus.org.
Education creates understanding.
Understanding creates compassion.
Compassion creates connection.
And sometimes when you are meeting your body where it is, that means stillness, rest, hydration and acceptance that healing is non linear.
Love and blessings,
Wendy
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