Living with lupus SLE has been one of the most unexpected and life altering experiences of my entire journey. When people see me, they often see a smile or someone who looks like they have it together. What they don’t see is the invisible fight happening underneath the surface. Lupus is not a condition that quietly sits in the background. It makes itself known in unpredictable ways and often at the most inconvenient times. And if you are living with lupus, or love someone who is, you already know how heavy this reality can be.
On WhatGraceLooksLike.com, I talk a lot about grace, faith, and being honest in the messy places of life. Lupus is one of my chronic conditions that has forced me into those messy places more times than I can count. It’s teaching me how to rely on God in ways I never expected and how to extend grace to myself when my body cannot do what my mind and heart want to.
This is what daily life with lupus really looks like.
Waking Up Already Tired: When The Morning Starts in the Negative
Most people wake up at 100 percent, or at least 70. I wake up at whatever number is somewhere between 1 and “phone shutting down now.”
This lupus fatigue is disrespectful. It will have you sleeping all night and still waking up like you fought a whole dragon in your dreams. There are mornings where rolling over feels like a full body workout. And yes, I do sometimes stare at the ceiling for a solid two minutes like, “Really, Lord? Already?”
I have had nights where I slept eight or nine hours and still woke up exhausted. And this fatigue is not the type a quick nap can fix. It is the kind that sits in your bones and drains your energy before the day even begins.
On the hardest mornings, I sit still, say a quiet prayer, and ask God to carry what I cannot. Some days that prayer is the only reason I am able to keep moving.
Pain That Moves Like Weather: The Unpredictable Forecast of My Body
Lupus pain is rude. It does what it wants. One day it is in my knees. The next day it said, “Let me visit the elbows.” Sometimes it hits everywhere at once and I am just sitting there feeling like a glow stick someone tried to crack.
The worst part is the unpredictability. You make plans, get cute, step outside, and boom. A flare. Lupus stays ready even when you are not.
I have canceled plans last minute. I have left events early. I have cried in my car before walking into something important. And every time someone says, “But you don’t look sick,” I smile politely while internally thinking, “And you don’t look annoying, but here we are.”
It is a strange kind of grief to mourn the version of yourself who once moved freely without pain.
The Mental Fog: When Your Brain Feels Like It Is Moving Through Water
Let me tell you. Brain fog will humble you. It will have you forgetting simple things, losing your train of thought mid-sentence, or staring at someone like they suddenly started speaking French.
It is like my brain is running on dial-up internet while everyone else has high-speed Wi-Fi.
I can be reading something basic and still squint like the words are auditioning for a new role. I have had moments where I forget to lock my doors, or leave my keys in the door… I’ve forgotten my phone and sometimes my purse. I’ve forgotten the login passwords at work, and I even can’t recall certain parts of my past- though I think that in particular- has to do with trauma too in a way.
Brain fog makes it hard to concentrate, remember simple things, or put words together the way I want to. I can be in a conversation and suddenly lose my train of thought. I can be reading something simple and still struggle to fully understand it.
This mental heaviness affects everything, from work to relationships to daily tasks. It can make me feel frustrated with myself, even though I did nothing wrong. Learning to give myself grace in these moments has been a journey all on its own.
Avoiding the Sun: When Something So Beautiful Can Become a Trigger
Before lupus, I loved being outside. Actually, I still do. Sunshine feels warm, peaceful, and energizing. But now, sunlight can also trigger flares, rashes, or increased pain. That means constantly planning my day around weather, avoiding long outdoor activities in the sun, dressing like it is fall even in the summer, and most importantly – WEAR SUNSCREEN no matter the time of day, no matter the weather, no matter the season whenever I do go outside.
So now, I am that person wearing long sleeves in July looking like I don’t know what season it is. People always ask, “Aren’t you hot?” And I just respond, “Yes” and I leave the rest to their imagination, LOL.
Being outside requires strategy. Shade becomes my best friend. Sunscreen becomes my ministry. I try to enjoy the outdoors as much as possible, but only in carefully measured, certified, FDA approved doses.
Medication And Side Effects: The Daily Balancing Act
Living with lupus means living with prescriptions, bloodwork, appointments, and constant monitoring. There is medication to calm your immune system, medication to reduce inflammation, medication for pain, and then medication to fix the side effects of the other medication. The medications that I for lupus could fill a small purse, actually they do- my medicine bag is actually an old pocket book!!
And all the side effects to the medication? Oh, they are here for a good time, not a long time. Steroids can change your weight and appearance. Immunosuppressants can make you more vulnerable to infections. And pain medications do not always touch the deeper discomfort.
Managing lupus is like walking a tightrope. You are trying to find balance, adjust to changes, and pray that the treatment that worked last month still works today.
The Emotional Weight: Living With a Condition That Has No Pattern
One of the hardest emotional challenges is the unpredictability. I never know when a flare is coming. It could be triggered by stress, weather changes, lack of sleep, certain foods, or sometimes for no clear reason at all.
Lupus comes in cycles. There are good days when I feel almost like myself, and then out of nowhere I can be hit with symptoms that take me right back down. That unpredictability can make it hard to plan, commit, or keep up, even with things I want to do.
It is emotionally heavy to live in a body that changes without warning. It requires a level of patience, resilience, and self compassion that I am still learning to master.
Relationships Change When Chronic Illness Enters the Room
I have had to explain why I cancel plans, why I leave early, or why I simply cannot hang out sometimes. Some people get it. Others do not. And honestly, lupus is a great filter. Anyone who cannot understand your limits probably was not meant to stay long.
Living with lupus makes you value the people who show up, check in, and see you fully, not just physically.
Chronic illness teaches you who your people really are. It also teaches you how to communicate honestly and set boundaries that protect your health.
Learning To Celebrate The Small Victories
Lupus has taught me to appreciate the small things in a way I never did before. A morning with no joint pain. A day where I have enough energy to cook. An afternoon when the fog clears long enough for me to enjoy a moment of clarity.
These moments become precious. They become reminders that even in chronic illness, there is still joy. There is still beauty. There is still life to be lived.
And on the hardest days, I try to celebrate these moments because they remind me that despite everything, God is still good and I am still here. And every small win is proof that lupus does not get to write the ending.
Finding Grace In The Middle of Lupus
Lupus is not something I would have chosen. It reshaped my life, my habits, my strength, and even my faith. But it has also taught me things I might not have learned any other way.
It taught me how to slow down.
How to ask for help.
How to listen to my body.
How to trust God when I do not understand what He is doing.
How to show myself compassion on the days when my body feels heavy and unfamiliar.
Lupus is not the end of my story. It is simply a chapter. And every day I am learning what grace looks like in this chapter. Some days grace looks like resting. Some days grace looks like pushing through. Some days grace looks like letting go of guilt and giving myself permission to simply be.
If you are living with lupus, please remember this. You are not alone. Your pain is real. Your exhaustion is not imagined. And your strength, even on the days you feel weak, is something powerful.
God sees you.
He hears your prayers.
And His grace is big enough for every flare, every disappointment, and every unknown.
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