A woman standing with photos of her with chronic pain

The Strobe Light of Chronic Illness – How Others See Only Small Snapshots

I was watching a cop show the other day and one of those obligatory, “drug addled-club goers rave” scenes came on. You know, the one that shows what Hollywood thinks all 20-somethings do for fun and everyone looks like models and drug dealers always wear dark sunglasses inside and call everyone “bro.”

Well, long story short and 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 people who aren’t us experience our RA.

Snapshots of life with chronic illness

A strobe light’s view. That’s what it’s like for people who are watching our 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.

Those are the only pieces that most people who aren’t in our lives intimately see and those bits and bobs paint a false picture of what it really like to live with 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 of autoimmune illness.

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, last week, they saw you again and although you looked fine on the outside, you were depressed because your latest relationship didn’t work out, again, due to complications of living with RA.

Other people only catch a glimpse

Now, if you step into that acquaintance’s shoes and see the moving picture they have of you put together from the strobe snapshots they’ve been handed, it’s 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.

Assumptions about chronic illness are infuriating

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 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.

We are good at hiding our illness

The thing is, most people only see that strobe-light version of your illness because we are so very good at hiding the worst of it from even those close to us. I truly wish the world would understand rheumatoid arthritis more than it does, I really do.

But, I can’t blame them either for not 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 do 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 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, the best way I have found is to tell people the truth when they ask how you are. 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 we talked about above 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?

Tell people about the strobe 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 the bad 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-misers.

Small slices never give the real picture

I digress. The point is, tell people that seeing small slices of you will never give the real picture of chronic illness. And don’t feel conceited for saying something like, “I make rheumatoid arthritis look goooooooood.” Because in the strobe light of the outside world, you do make it look good, no matter how bad you really are, because it takes strength, and that always looks good. Even if you wear dark sunglasses inside the club. Talk soon.

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

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