I wrote this article for The Mighty Site and it is being republished here with their permission:
Most of the articles I write come from a pretty personal place – often spurred by some moment or incident where I thought, “Gee, someone else may be going through that. Maybe I can help them.”
Well, today I went out during a flare with my cane to get hot wings for my fiancé and the server asked me how sick I was and if there was a cure, all because I had a mobility device. Not having used it for a few weeks, I had forgotten what it felt like to walk around without it and to be able to feel invisible in a crowd of people once again. With a mobility device of any kind, you tend to stand out like a sore thumb, and there are always those people who love to ask ignorant questions, well-intentioned though they usually are.
I’ve had people ask all sorts of questions, from when and if I will die to when and how did this happen to me to asking me what caused it to one person actually telling me they know for a fact my life expectancy is shorter because I have lupus. This of course spurred an all nighter of agonizing WebMD-ing and Google searches, which made not only myself but my fiancé (and dog too, probably) upset over the “what ifs” and the “how do they know” and the “will this/won’t this happen.”
I am not an expert at handling insensitive passerby or people in general. I am an expert, probably just like you, at meeting them on the street and being unsure of what to say that will be a kind balance of standing up for myself and my life as well as answering their questions in a polite but firm way.
I have learned the best thing to do is be kind and to rise above it. Tell them about a successful venture or thing you have recently done or are working on, a talent you have, something you love to spend your time doing – something outside of your illness. Use the moment as an opportunity to teach that person that people can be more than their illness. Try to remember this may be the first time that person has encountered a person who is ill, like yourself, and they genuinely don’t know a better way of showing their concern than being how they are in that moment.
Someone I respect very much always says to look at a person’s intent, not their actions – so, unless someone is openly making fun of you, it is best to err on the side that they didn’t want to upset you and had your best interest at heart. I know this doesn’t make it easier to take things less personally, but that part is on you (and me) to handle, just like it is to learn to handle the stranger who has a million questions. If you learn some strategies, it may become easier in time.
That same person also tells me to have “answers on deck” for ignorant people who ask me these questions, so I can exit quickly and feel in control of the situation, and not so taken aback and upset or thrown by their remarks as I am if I haven’t thought briefly about what to say if someone were to ask. Sometimes I’ll get asked a few times in the same day – and people who have an illness or mobility device know how that can make you feel if you are’t prepared or ready to deal with it. It can really ruin your day!
woman posing with her cane which has skulls on it
My answers? Depends what they ask. Sometimes they ask how old I was when I got sick. That really hurts. Sometimes I tell them, sometimes I don’t. I typically tend to say I have lupus. Some people will then ask what it is or if there is a cure, and I say I am doing well, but there isn’t. Still, I am positive and will be fine, thanks for asking. Then I change the subject in hopes they will give up. I change the subject to how I am busy writing and just came in to order x or y, and how was their day? And then they usually say, “Oh, how lovely!”
You are in control at that point, and can keep changing the subject or evading answering questions or leave the area. You also don’t have to answer any questions at any point from when they started asking. “No” is a full sentence. Remember that. Have answers prepared for “not answering” at all if you don’t want to.
It can be a real downer to run into people who ask or probe or have their own opinion about your illness (and how to treat it), but remembering they just want to help is what’s important. I try to remember too that people who are nasty (the really nasty ones), like bullies in high school, are most often mean because something hurts inside themselves. Aside from this, people who are just asking but doing it the wrong way are doing the best they can, and it is up to us to teach them and the rest of the world about us and our illness if we want to change their opinion.