Why Accurate and Empathetic Media Reporting on Chronic Illness Matters

A few weeks ago, I woke up and, as I do each morning, I went online to check the news on my phone. As I scrolled through my timeline, my eye fell on a tweet from a Dutch newspaper in which they linked to an opinion piece written by one of their columnists. I immediately knew from glancing at the title that this would be one of those articles that would make the metaphorical steam come out of my ears. And it did.

We all know them. Media reports that don’t take chronic illness, physical or mental, seriously. This columnist – who thinks a TV host is a narcissistic attention seeker for capturing her battle with burn-out on camera – isn’t the first and he won’t be the last to write a piece doubting my very reality. In my chronically ill lifetime that now spans a decade and a half, I have encountered many people who do not take my illness seriously. It has left deep marks. While some of us might have gotten used to receiving certain comments from people not realizing what it is like to be chronically ill, I still feel so powerless when confronted with it.

 

This piece appearing in a newspaper is an issue close to my heart. I have a degree in journalism and it’s more than frustrating that, due to my health issues, I cannot work as a journalist and even more so that, due to the ignorance of other journalists, my position in society is harmed by pieces like this. Of course there are journalists who understand and write brilliantly about living with chronic illness, but the types of articles that mock our very real realities harm us in more ways than they realize and I can’t stand for those any longer.

It’s our families and friends who read these newspapers and watch these news reports. When time and time again my illness – this particular writer called chronic fatigue syndrome, and many other illnesses, a “fashion disease” and even managed to combine it with hysteria – pops up in articles in which people can spout their ill-informed opinion, yet voices like mine and yours are hardly ever heard, can I blame society for starting to doubt me? If I were told time and time again that ill people are just attention-seekers, I might start believing it too. This is why accurate, empathetic reporting on people with (chronic) illness and our daily lives matters.

We face stigma every day of our lives. We read and watch media devalue our serious illness, calling it fashion, a hype, merely an attitude issue, and they don’t acknowledge the very real and debilitating symptoms we deal with every single day. I have finally acquired an elephant’s skin so I don’t feel personally attacked by pieces like this anymore. Yet when I look at the broader societal views of chronic illness and people with illnesses – even more so of those whose underlying biological causes might not be clear yet to the medical world, like mine – pieces like this, by people who clearly have no idea what it is like to deal with illness, are too harmful in my view to merely let pass by.

I wish that people who attempt to write pieces like these would take a moment to think about what they would do if they dealt with our symptoms every day. How it would make them feel after one week? One month? One year? A decade? How would they deal with being so exhausted even lying down makes them want to cry and 12 hours of sleep does nothing to abate the debilitating fatigue? Pain so bad it makes you perpetually moody and exhausted? How would they react to doctors telling them, “Your symptoms are part of what we call nowadays [this or that].” What would they feel if that sentence was followed by, “Unfortunately we have no idea what it’s caused by or how to cure or even treat it. You’ll just have to live with it.”

I wish reasonably healthy people judging us in newspapers and on television realized that achieving nothing you set out to do in life, feeling like a heavy burden on your family and the worst friend while dealing with symptoms at the same time isn’t the picnic some seem to think it is. Let alone being called an attention-seeker or a liar, too.

The chronically ill life isn’t one any of us would have chosen for ourselves. And it sure isn’t anything we boast about. If we do talk about it publicly on TV or in newspapers it is to educate ignorant people like this columnist. So that one day no one who will ever judge us so falsely again.

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Thinkstock photo via grinvalds.