A chronic dilemma: To answer truly, or answer superficially?

Have you ever hesitated before answering the question “How are you?” If the answer is yes, then I want to share something with you. Living with lupus (or any chronic illness) comes with unspoken rules that many of us feel pressured to follow in answering this question: Keep it light. Keep it simple. Don’t be “too much.”

We’ve all been there. Someone asks how we’re doing or feeling, and in a split second, a debate occurs in our brain: Do I tell them the truth? Do I mention the fatigue so deep that my bones are aching? The side effects of my latest medication? The four-hour nap I needed just to function today?

Or should I just smile, nod, and say, “I’m fine!” because it’s easier? Because I don’t want to be that person, the one who makes people uncomfortable with reality? Because I don’t want to take up too much of their time with a long list of answers?

The truth is, many of us feel like we have to shrink ourselves down, make our experiences more digestible for others, and keep conversations at a surface level — not because we want to, but because we fear being seen as too much, too emotional, too dramatic, too exhausting to listen to. And that feeling? It’s heavy. It’s isolating. And it’s completely unfair.

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So why do we feel this way when we’re living with a diagnosis?

Somewhere along the way, society decided that health struggles should be either inspirational or invisible. If you’re not fighting with a brave smile, then you should just keep it to yourself. But lupus doesn’t fit into neat little boxes. No chronic illness does. Some days, we can push through. Other days, we’re struggling just to make it to the kitchen for a glass of water, let alone take a shower or wash our hair.

We downplay our pain because we don’t want to burden others. We keep our struggles to ourselves because we’ve seen the awkward expressions, the subject changes, the well-meaning but frustrating advice. It’s easier to stay quiet than to deal with the discomfort of others. But in doing so, we end up cutting off a part of ourselves.

You see, constantly censoring ourselves isn’t just emotionally exhausting; it’s damaging. We deserve relationships where we don’t have to sugarcoat our reality. Where we can be honest and still feel loved, not like we’re giving someone “too much to handle.”

A better set of responses

Finding the right people to share our truth with is essential — not just for our mental health, but for our physical health, too. Stress and emotional suppression take a toll on our bodies. The more we bottle things up, the more they weigh on us, and for those of us with chronic illness, that weight can trigger flares, worsen fatigue, and add to the never-ending cycle of stress-induced symptoms.

So who are the right people? They’re the ones who don’t flinch when you say you’re exhausted for the third day in a row. The ones who ask about your latest doctor’s visit not out of obligation, but because they genuinely care about you. The ones who hold space for you without trying to fix you.

Sometimes they’re longtime friends or family. Sometimes they’re fellow chronic illness warriors you met online who just get it because they’re walking a similar path. And sometimes they’re new connections, people you meet through support groups or even unexpected places who turn out to be the best kind of people — the ones who see you, all of you, and don’t look away.

If I can share any message to take away when you’re feeling this way, here it is: It’s time to let go of the guilt. You’re not too much for the right people. Your experiences, your truth, and your emotions aren’t something to apologize for.

Of course, that doesn’t mean you have to share everything with everyone. Not everyone will get it. Not everyone will be the right audience for your full reality, and that’s OK. But you should never feel like you have to hide or shrink yourself to make others comfortable. You deserve people with whom you can be your full, unfiltered self.

The next time someone asks, “How are you?,” take a breath. Answer in whatever way feels honest to you in that moment. Be authentic and make a commitment to stay true to yourself. And know that the people who truly care will be there to listen, to support, and to remind you that you are never too much. You’re simply you. And that’s more than enough. You are worthy of being seen. You are worthy of being heard. And you are worthy of people who make space for your truth.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.