What Not To Ask Someone With Lupus

"But you don’t look sick." We’ve all heard this, and we all hate it. Every time someone said this to me, especially in the early years of my illness, I felt invalidated. It felt like the crippling exhaustion I struggled with each day was dismissed. It felt as if the grief I experienced for my old life went unacknowledged. It felt like my pain wasn’t real because it wasn’t showing on my face.

Lupus is an invisible illness

Like many people with lupus, dealing with an invisible illness doesn’t end with juggling doctor appointments, making lifestyle changes, and coping with painful symptoms. Living with an invisible chronic illness also means dealing with other people's ignorance or disbelief in your condition. That’s why I’ve never minded if people ask me questions about my experience with lupus.

What not to ask someone with lupus

Public awareness of this disease makes life easier for everyone who has to live with it, and I’m happy to speak openly and honestly about my life with lupus. However, there are some questions I find irritating or difficult to answer. Here are some of them:

How are you?

When you have a chronic illness, this simple greeting suddenly becomes a loaded question. Do I answer "ok" or "good," then feel as if I’m being inauthentic? Should I pretend to be fine when I’m not? Or do I answer honestly and risk being seen as negative or dramatic? If I answer honestly, will the person I’m talking to even understand all the medical jargon that’s become a normal part of my vocabulary? What used to be a generic greeting when I was healthy is suddenly much more complicated after getting sick.

When are you going to feel better?

Many normal, able-bodied people have trouble understanding that illness can be chronic. If you haven’t personally experienced a long-lasting illness, it’s a difficult concept to wrap your head around. Most people who aren’t chronically ill only experience short bouts of illness: the flu, a sprained ankle, maybe surgery for a ruptured appendix, or a torn rotator cuff. But being sick for years or even decades with no cure? Chronic illness can’t be cured with medication or surgery, so it falls outside the realm of most people’s experience. Like the possibility of a sinkhole swallowing their house or of a bank mistake robbing them of their life savings, most people don’t want to think about an illness that has no end in sight.

Have you tried exercise, yoga, crystals, etc.?

One thing that’s always amazed me about living with a chronic illness is the number of people offering "cures," even though they do not know my disease. Often, people who ask this question will interrupt me, explaining my disease to them to tell me how to fix a problem they haven’t tried to understand. I usually respond to unsolicited advice with, "Thank you, but I only take medical advice from my doctors."

Why can’t you stay out late/go hiking/take a road trip with us?

The lifestyle changes I’ve made to stay healthy often confuse people. As far as I know, I was the only 21-year-old with a bedtime at my university. My limitations are especially confusing to other people because my health fluctuates. I’m able to stay up late occasionally, but not regularly.

I’ve found that only close friends or people who see me every day understand how my symptoms come and go and that the lifestyle changes I’ve made have to adapt to my symptoms.

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