The Sickness Nobody Can See
A Raw, Honest Look at Life with Lupus
Please note: I am sharing my personal experience, not medical advice. Lupus is complex and affects every person differently. Please consult your healthcare provider for medical guidance specific to your situation.
Today I want to break my silence… because it’s Lupus Awareness Month, and somewhere out there is a woman who just heard the word Lupus for the first time and feels her world tilt. There’s a woman whose friend cancelled again, and she doesn’t understand why. There’s a woman sitting in the dark at two in the morning, caught in a flare, wondering if this is just her life now… if the pain, the fatigue, the confusion, the isolation will ever go away.
This is for her. And maybe it is for you.
Four years ago, I had never heard the word Lupus. Today, it shapes almost every decision I make.
So what is Lupus, exactly?
Lupus is a chronic autoimmune disease. In plain language, that means your immune system… the very thing designed to protect you… turns against your own body. Instead of fighting off infection and leaving your healthy tissue alone, it attacks your joints, your skin, your kidneys, your heart, your lungs, and your brain. It causes inflammation, damage, and pain in places you didn’t even know could hurt.
The medical name is Systemic Lupus Erythematosus, or SLE. It affects predominantly women, with a female-to-male ratio of roughly 10 to 1. It does not discriminate by age. It has no cure.
There are different types of lupus, but SLE is the most common and the most complex. It can be mild in one person and life-threatening in another. And here is the part that makes it so uniquely isolating: it is almost entirely invisible.
What does it actually look like from the outside?
The only visible symptom most people ever see is the skin rash. The classic butterfly rash across the cheeks and bridge of the nose. Skin flares on the arms and body. A face that looks flushed. Maybe a little puffy or in my case very puffy and flushed.
That is all they see.
They do not see the joint pain that feels like every hinge in your body has been filled with broken glass. They do not see the mornings where standing up from the bed is not a movement but a negotiation. They do not see the cramping that wakes you at night, the fatigue that is not tiredness but a whole-body heaviness that no amount of sleep fixes.
They do not see the brain fog. That strange, thick cotton wool in your mind where you cannot find words, cannot follow a conversation, cannot remember what you walked into a room for. They do not see that sometimes you stare at a menu for ten minutes and still cannot decide what you want, not because you are indecisive, but because your brain simply will not cooperate today.
They do not see the loss of movement. The days where your fingers will not close properly or your knees will not bend the way knees are supposed to.
What they do see is you… looking fine. And that is the cruellest part.
The symptoms nobody talks about
Lupus is not just a rash and some fatigue. The symptoms are wide-ranging, unpredictable, and cumulative. They include:
Severe joint pain, stiffness, and swelling. Extreme fatigue that does not lift with rest. Photosensitivity… sunlight can trigger a flare, which means something as simple as walking to the car on a sunny day can undo you. Temperature sensitivity… when my body gets cold or hot, it triggers a flare. Headaches, confusion, and memory loss. Chest pain. Shortness of breath. Hair loss. Mouth sores. Kidney involvement that causes its own host of complications.
And then there is the unpredictability. The brutal, relentless unpredictability.
I can push myself hard today and spend the next three days… or three weeks… in bed because of it. There is no test that can tell me whether I will be able to attend an event next week. I cannot plan for tomorrow because today I am fine and tomorrow I may not be able to get out of bed.
That is not an exaggeration. It is just Tuesday with Lupus.
The dangers most people don’t know about
Lupus does not stay on the surface. Left unchecked or poorly managed, it attacks the organs. Around 50% of lupus patients experience some form of cardiac complication. That includes pericarditis… inflammation of the sac around the heart… and myocarditis, which is inflammation of the heart muscle itself.
My heart pains because this disease causes inflammation in the heart muscle and can cause fluid to accumulate around the heart. That chest tightness, that irregular beat… it is not anxiety. It is the disease trying to take what it can.
Cardiovascular disease is, in fact, the leading cause of early death in people with Lupus. Research shows that women with lupus between the ages of 35 and 44 face a 50 times greater risk of heart attack than women without lupus in the same age group.
The lungs are also at risk. Lupus can cause inflammation of the chest cavity lining, making every breath painful. It increases vulnerability to pneumonia and can cause a condition called lupus pneumonitis… where the immune system attacks the lung tissue directly. That is why a simple case of bronchitis in my body does not stay bronchitis. It goes straight to pneumonia. My lungs have weakened. What someone else fights off in a week, I fight for a month.
Lupus can also affect the kidneys, the brain, the blood cells, and the nervous system. It is not a ‘just a rash’ kind of disease. It is a full-body, whole-life kind of disease.
The frustrations that break you…
I had Cancer as a young mom. My children grew up watching my hair fall out, the vomiting, the hospital stays. It was brutal. But with X-rays and blood work and scans, the doctors could tell me something. They could look at a result and say: this is where we are.
Lupus does not give you that.
There is no test that draws a line from today to tomorrow. There is no scan that says you will be well enough for your daughter’s birthday dinner next Saturday. There is no blood result that gives you permission to make plans.
I have had posts going out every day on this blog, sometimes three times a day. And then this year started in pain, and the days blurred, and I looked up and it was May and the last time I could really surface from the brain fog long enough to understand what was on my own plate… it was the beginning of April.
A whole month. Gone.
I know what it feels like to be a bad friend. To not answer messages. To miss phone calls. To miss gatherings that I wanted to be at, I know what it is to cancel on people who love me and watch the hurt cross their faces even though I am too sick to explain myself properly.
I know what it is to hold pain medication in your hand and then put it down because forty minutes ago there was nothing wrong with you and you cannot reconcile the two realities. Because it feels strange to need pain relief when an hour ago you were fine. Because Lupus makes liars out of all of us… not because we want to deceive anyone, but because our bodies deceive even us.
The ageing nobody warned me about
There is something happening this year that I am still processing. The recovery is harder. The faking it is harder. It is aging me in ways that have nothing to do with years on the calendar.
I try so hard to live. And sometimes all I can do is survive.
Those are two very different things. And anyone who has walked this road knows the quiet grief of the gap between them.
But God…
“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
~ Joshua 1:9
I did not plan to have Lupus. I did not plan to wake up one morning four years ago and find that my body had become a battleground. But I serve a God who does not waste a single thing… not a single flare, not a single fog-filled morning, not a single cancelled plan.
He walks with me through this. Not ahead of me where I cannot reach, and not behind me where He cannot help. He is right here. In the hard breathing and the joint pain and the mornings I cannot lift my head.
And if you are walking this too, sister… if this is your story, or the story of someone you love… I want you to know that you are not making it up. You are not weak. You are not a bad friend. You are not failing.
You are fighting a fight that most people cannot see.
And the One who sees everything… He sees you.
“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”
Psalm 73:26 (NIV)
Father God, we come before You, not polished or strong, but honest… carrying bodies that feel unfamiliar and days that do not always make sense. You see what no one else can see. You understand what we cannot always explain. And right here, in the quiet ache and the hidden battles, we draw near to You.
Lord, You are the Creator of every cell, every system, every breath within us. Nothing in our bodies is a mystery to You. Where there is inflammation, You see it. Where there is exhaustion, You feel it. Where there is confusion and fog, You are not absent. You are present… steady… unshaken.
Father, for every woman walking through Lupus, for every unseen flare, for every morning that begins with pain before feet even touch the ground… would You meet her there?
When her body feels like a battlefield, be her peace.
When her strength feels spent, be her portion.
When her thoughts are clouded, be her clarity.
When she feels forgotten, be her reminder that she is known.
Lord, there are days where she questions herself… wonders if it is all in her head… wonders if she is failing those around her. Speak truth into those places. Silence every lie that tells her she is weak, or dramatic, or less than.
Your Word says in 2 Corinthians 12:9 that Your grace is sufficient, and that Your power is made perfect in weakness. So we do not hide our weakness from You… we lay it before You. We invite Your strength into the very places we feel we are coming undone.
Jesus, You are not distant from suffering. You understand pain. You understand weariness. You understand what it is to carry something heavy. And because of that, we trust You to walk closely with us… not ahead, not behind… but right here, in the middle of it.
For the days of flares, bring relief.
For the nights of pain, bring rest.
For the appointments, the medications, the uncertainty… bring wisdom and peace.
Strengthen her spirit, Lord. When her body cannot keep up, let her soul remain anchored. When she cannot do what she once did, remind her that her worth has never been found in what she produces, but in who she is… Your daughter.
Surround her with understanding hearts… people who do not rush her healing or minimize her pain. Place grace in her relationships, and gentleness in her own expectations of herself.
And Lord, when fear tries to rise… fear of the future, fear of progression, fear of what tomorrow might hold… quiet it with Your presence. Remind her that You are already in her tomorrow. There is no day she will walk into that You have not already stepped into first.
Your Word says in Isaiah 41:10:
“Do not fear, for I am with you… I will strengthen you and help you; I will uphold you with My righteous right hand.”
So we hold onto that promise now.
We may not understand this road… but we trust the One who walks it with us.
And even in this… especially in this…
You are still good.
You are still faithful.
You are still God.
We surrender the sickness we cannot see… into the hands of the God who sees everything.
In Jesus’ name,
Amen.
Women Anchored in Hope.
Want to learn more about Lupus?
The Lupus Foundation of America (lupus.org) and the Mayo Clinic both carry clear, thorough information. If you have been newly diagnosed, or if you suspect something is wrong and your body has not been heard yet, please reach out to a rheumatologist. You deserve answers, not just management.
