The Strobe Light Effect: What People Get Wrong About Chronic Illness

I was watching a cop show the other day, and one of those “drug-addled club” scenes came on. You know, the one that shows what Hollywood thinks all 20-somethings do for fun. Completely apropos of nothing, one of the strobe lights on the dance floor hypnotized me for a few seconds, and I suddenly realized – a strobe light is exactly how other people experience our chronic illness.

Snapshots of life with chronic illness

A strobe light view is what it’s like for people who are watching our chronic illness from the outside in. They see snapshots of us in a time-lapse fashion, and they don’t ever get the full picture of what’s actually happening. A good day here, a missed party there, a trip to the ER now and then.

Besides our friends and family who are in our lives more intimately, those are the only pieces that most people see. Those bits and bobs paint a false picture of what it's really like to live with a chronic or long-term illness. Most people never get to the ooey-gooey juicy nougat center of what it’s really like to live with the pain, fatigue, and mental torment.

Misconceptions of living with chronic illness

It’s an interesting visual. Just think about it for a second. Say you have an acquaintance who sees you every now and again. When they saw you a few months ago, you were limping and using a cane because your knee was flaring.

Then, when they saw you last month, you looked fine. It was one of those rare really good days. Then, the most recent time they saw you, you looked fine on the outside, but you were depressed because your latest relationship didn’t work out, again, due to complications of living with chronic illness.

Other people only catch a glimpse

Now, step into that acquaintance’s shoes and visualize the moving picture they've put together from the snapshots they’ve been handed. It’s likely of someone who occasionally has physical pain, but otherwise looks pretty good and deals with more or less the same mental stuff that most normal people do.

Holy cow! This couldn’t be further from the truth. But because the strobe light only shines on you when you see others, that’s the movie that your zoetrope of chronic illness plays to anyone watching from the outside, which is almost everyone.

Why assumptions are so frustrating

So, why am I telling you this? It’s because I see, more and more on social media and other places, people getting angry and blaming others for making assumptions about their chronic illness. I get it, believe me.

When people make assumptions or have preconceived notions about your disease, it can be infuriating and demeaning. Now, if someone still does it despite knowing the truth, then you have every right to be upset.

How we hide our illness

The thing is, most people only see that strobe light version of your chronic illness because we are so very good at hiding the worst of it from everyone, including our friends and family. I truly wish the world would understand chronic illness more than it does. I really do.

But, I can’t blame them for not understanding when all they have to go on is a few snapshots, most of which I have proverbially “photoshopped” by propping myself up as much as possible before I go out in public. No cane, dressed up well, looking as spry as possible – is it any wonder that people get the wrong idea?

How I deal with misconceptions about chronic illness

Where does that leave us? Do we stop trying to prop ourselves up before going out? Should we just show up not-showered, week-old jeans on, ace-bandaged, and IcyHot slathered, with tears in our eyes?

Well, besides working wonders for your dating life, it’s not going to do much for you other than offend those with a keen sense of smell and an aversion to menthol (IcyHot's main ingredient). Ultimately, though, it’s probably not the best way to fight this particular form of ignorance.

I tell the truth about how I'm feeling

Honestly, I have found the best way to deal with it is to tell people the truth when they ask how I am. We always say we are “fine.” It’s pretty much the standard response for any queries about our illness, but those days have to end.

That strobe light effect, when combined with the whole “I’m fine” rigmarole, only allows the misconceptions to burrow farther into friends and family’s virgin unknowing brains. Mmmm, how’s that for a visual?

Explain the strobe light effect

Tell people the truth about the strobe effect. Right here, right now. I’m giving you permission to steal it. Explain to people that when they see you, they are probably seeing the best version of you, propped up short-term by pills, adrenaline, and hope.

Explain that, in reality, things have been difficult lately, and there have been more than a few times where you ended up staying in bed all day.

Tell people that you burst into tears the other day when Wendy’s forgot to give you BBQ sauce for your chicken nuggets because you were really looking forward to just pigging out for once without worrying about fat or calories or carbs. No? Just me for that one? Well, the Wendy’s restaurants by me are notorious sauce-forgetters.

Snapshots never give the whole picture

I digress. The point is, tell people that seeing small slices of you will never give the real picture of chronic illness. You shouldn't feel conceited for saying something like, “I make chronic illness look goooooooood.”

Because in the strobe light of the outside world, you do make it look good, no matter how bad you really are. It takes strength to live with a chronic illness, and that always looks good. Even if you have to wear dark sunglasses inside the club.

This article was originally written by Daniel Malito and published on our sister rheumatic community, RheumatoidArthritis.net.