Why Chronic Illness Patients Get Tired of Talking About It
- rosetakelli
- 1 hour ago
- 5 min read
For someone living with a chronic illness, like lupus (Systemic Lupus Erythematosus), the disease is an undeniable, day-to-day reality. Yet, you might notice that a patient often grows weary, even resistant, when asked to discuss their health. This isn't because they don't want to educate people; it’s because the non-stop necessity of discussing, explaining, and justifying their illness becomes a burden in itself.
Here are the primary reasons why chronic illness and Lupus patients get tired of talking about their condition:
1. It’s a Constant Reliving of Trauma
Every time a patient discusses their symptoms, their pain levels, or their most recent flare, they are essentially forced to relive those difficult moments. For a lupus patient whose disease is invisible, they often have to provide detailed, clinical evidence just to be believed.
The Emotional Tax:Â Chronic illness is emotionally taxing. Being asked to explain it repeatedly forces the patient to return to a place of pain, fear, and frustration when they are often trying their best to focus on something else, like a job or a hobby.
No Escapism:Â The illness is always present. When friends or family constantly inquire about it, it removes the few moments of mental escape the patient might have, making the disease feel even more omnipresent.
The Fight or Flight Response:  A chronically ill body often finds itself stuck in defensive states because the internal cues of illness are relentless, even talking about an illness journey, current treatments, or concerns about the future can send someone into "fight, flight, or freeze" and dysregulation of the nervous system. Learn more here.
2. The Weight of Unsolicited Advice
When a chronic illness patient shares their struggles, they are often met not with empathy but with a torrent of well-meaning but unhelpful advice.
This is especially true for lupus, which is often misunderstood.
The "Magic Cure" Fatigue:Â Patients get tired of hearing, "Have you tried yoga?" or "My cousin cured her condition with a detox tea." These suggestions dismiss the severity and complexity of the disease, making the patient feel that their actual, physician-managed treatment isn't good enough.
The Need to Justify: The patient then feels obligated to explain why that "cure" won't work, which turns a simple conversation into a defense of their medical choices.
Or Simply That you are "Not OK" As You Are! The unsolicited advice adds to the sense that a person with a disability or chronic illness like lupus is not acceptable as they are. That they must always be "fixed" to be what is socially desired. This is, of course, ableism at its finest. Read more on that here.
3. The Lack of Reciprocity (The Conversation is One-Sided)
When someone asks a patient, "How are you really?" they often don't want the full, honest answer. They want a concise, positive update that confirms the person is "getting better."
The Emotional Labor:Â The patient is expected (but shouldn't be) to manage the emotional reaction of the listener. If they say, "My pain is a 9 today," the listener might become visibly uncomfortable, and the patient then feels responsible for comforting the listener. This is a CONSTANT issue.
The Loss of Identity: When every conversation revolves around sickness, the patient's identity shrinks to "the sick one." It can be used to control, use power plays, or gaslight, and it can be very hurtful. Not to mention that EVERYONE has their "stuff" and no one is without some disease, defect, or disability, it is baffling how people can laser focus on chronic illness patients like they are an anomaly. People with chronic illnesses are HUMANS, not aliens (or superheroes), and want to be treated like humans. They want to talk about books, movies, work, or hobbies—things that make them feel like a person, not just a list of medical conditions.
4. It's Hard to Explain the "Invisible"
Lupus is a master of disguise, causing invisible symptoms like severe fatigue and brain fog that are often minimized because the patient "looks fine." Its symptoms aren't always visible to the naked eye. This invisibility is a major source of frustration and misunderstanding. People with lupus are constantly told, "But you don't look sick." This common phrase, while often well-intentioned, completely dismisses the immense pain and exhaustion they experience daily. It can lead to a sense of isolation and the feeling that you have to justify your illness to friends, family, and even coworkers. The infamous "butterfly rash" across the face is one of the few visible symptoms, but not all patients get it, and symptoms can come and go in unpredictable "flares." This makes it even harder for others to grasp the severity of the disease.
The Explanation Loop: The patient has to repeatedly explain that "looking well" (whatever that means) doesn't mean "feeling well." They get tired of trying to quantify the exhaustion of a major flare or the confusion of brain fog for someone who simply can't grasp the concept. This constant need to justify their reality is exhausting.
🌻 How to Be Supportive
If you care about someone with a chronic illness, the best way to help is to shift the focus from the illness to the person.
Ask About the Person, Not the Disease:Â Instead of, "How's your Lupus?" try, "What's the best thing that happened this week?" or "What are you reading right now?"
Listen to Understand, Not to Fix: If they do bring up their illness, simply acknowledge their struggle with empathy. A simple, "That sounds incredibly hard," is far more supportive than a suggestion for a diet change.
Respect the Silence:Â Understand that sometimes, silence is a form of self-care. If they don't want to talk about it, don't press them.
Remember that lupus is one of MANY parts of a person.
Simple actions like listening to a patient's experience without judgment, offering support, and advocating for policies that improve healthcare access and affordability can make a world of difference. Lastly, allowing a person with a chronic illness to step away from their patient role is one of the kindest ways to support their long, silent battle.
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 2025.
Sources:
The Mighty: I Have a Chronic Illness and I’m Tired of Being Asked How I Am
Healthline:Â The Stress of Explaining an Invisible Illness
Lupus Foundation of America:Â Lupus and Your Emotions
Psychology Today:Â The Pain of Chronic Illness in the Age of Self-Care
CreakyJoints:Â 10 Things People With Chronic Illnesses Wish You Knew About How to Help