The Decision Marathon: The Hidden Mental Load of Living with Lupus
- rosetakelli
- 19 hours ago
- 4 min read
If you looked at someone with lupus, you might see them sitting on a park bench, working at a desk, or waiting in line at a supermarket. What you don't see is the high-speed supercomputer running in their brain, processing a relentless stream of micro-decisions that a healthy person never has to consider.
For those with chronic illness, life isn’t lived in "autopilot." It is a 24/7 tactical simulation where every choice has a physical price tag.
1. The "Spoon Math" of the Morning
The decision-making begins before your feet even hit the floor. You wake up and immediately perform a "system scan." How do the joints feel? How is the balance, the blood pressure, the swelling of the ankles, and the urine color? Is that a headache or a lupus headache?
The Decision: If I shower now, will I have enough energy to cook breakfast?
The Stake: If you "spend" too much energy on hygiene, you might be too shaky to hold a frying pan by 9:00 AM.
2. The Wardrobe vs. The Weather
For most, picking an outfit is about style or professional standards. For a lupus patient, it’s a medical strategy.
The UV Factor: Is this shirt thick enough to block the sun? (Photosensitivity is a major trigger for flares).
The Inflammation Factor: Are my hands too swollen for buttons today? Are my feet too inflamed for these shoes?
The Layering Game: Will the air conditioning at the office trigger my Raynaud’s Disease, turning my fingers blue?
3. The Social "Risk Assessment"
An invitation to a Friday night dinner isn't just a "yes" or "no." It’s a complex risk-benefit analysis.
The Question | The Potential Cost |
"How loud is the restaurant?" | Sensory overload can trigger a fatigue crash. |
"Is there a long walk from the parking lot?" | Those extra steps might mean you can't walk tomorrow. |
"Who else is coming?" | If someone has a "slight cold," your suppressed immune system could turn that "cold" into a hospital stay. |
4. The Medication Tightrope
Managing lupus often involves a pharmacy’s worth of pills. Deciding how and when to take them is a constant mental burden.
The Side Effect Shuffle: "If I take my prednisone now, I’ll be productive, but will I stay awake until 3:00 AM?"
The Timing Game: "I need to take this on an empty stomach, but I’m nauseous. Do I wait and risk the med not working, or take it now and risk throwing it up?"
5. The "To Mention or Not to Mention" Dilemma
Perhaps the most difficult decisions are the social ones. Every time you interact with someone, you decide how much of your reality to share.
At Work: "Do I tell my boss I'm flaring and risk being seen as 'unreliable,' or do I push through and risk a total collapse?"
With Friends: "Do I tell them I’m in pain for the third time this week, or do I mask it, so I don't become labeled the 'sick friend'?"
Why "Decision Fatigue" is Real
By lunchtime, a person with lupus has often made more critical choices than a healthy person makes in a week. This leads to Decision Fatigue—a state where the brain is so overworked from weighing consequences that it simply shuts down. This is why, by 6:00 PM, a patient with a chronic illness might not be able to decide what to have for dinner. It’s not that they don't care; it’s that their "decision muscle" is torn.
If you feel like you’re experiencing the symptoms of decision fatigue daily, it’s probably a good idea to let a healthcare provider or therapist know.
There is something to be said about not just decision fatigue but information overload. More research is suggesting that monitoring health data can become an obsession and lead to depression and anxiety. A 2021 article in the Cardiovascular Digital Health Journal warns: “although unlimited access to digital health information can motivate some individuals to engage in healthy behaviors, these data may inadvertently contribute to pathologic symptom monitoring and impaired function in others.” Another 2024 study on the impact of smartwatches on health-related anxiety, researchers found that “some participants mentioned an increase in perceived stress” upon wearing a health-monitoring smartwatch for one week, while cautioning that “the impact of smartwatches on perceived stress and health anxiety is complex...”
A Note to the Support System
If you love someone with lupus, understand that their "flakiness" or "indecision" isn't a personality trait. It’s a survival mechanism. They are tired—not just in their muscles, but in their minds.
It is a very common thing to overlook the "overburden" of decision-making your friend, sister, co-worker, partner, or parent has to live with every day when navigating lupus. Simply acknowledging that it is hard is a great way to show that person you see that they are trying to do their best.
Compiled By:
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog are owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2026.
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This is one of the clearest explanations I’ve read of what the “invisible” mental load of lupus actually feels like in daily life. The way you describe constant scans, calculations, and trade‑offs makes it very real for someone on the outside. I work in a totally different area—running a small second hand clothes online project—but I still recognise that idea of decision fatigue and how overwhelming too many tiny choices can become. Thank you for putting this into words so friends, family, and co‑workers can better understand what’s really going on behind the scenes.