Some Thoughts About Venting on MS Forums: Our Rights and Responsibilities

Like many of you, I read lots of articles and accompanying patients’ comments on various MS forums. Time and again I am moved to tears by the candid stories people share and the compassionate remarks of support offered by their readers. It makes me feel proud to be part of this disease community. But more and more lately, I see a disturbing trend infiltrating health forums in general: Someone posts about their thoughts and experiences and a few people then respond with hostility. It snowballs into relentless bullying and results in not a few vulnerable souls fleeing the forum. I can easily imagine them crying themselves to sleep, never to frequent a health forum again. We have driven them away to despair in their lonely little worlds--and we have failed them, miserably.

I am not exaggerating when I say that it has kept me up nights and troubled me during my waking hours to the point of distraction. I feel personally, deeply offended by it, hurt and weepy, as though what I read was directed at me. There have been times when such hostility has indeed been directed at me in response to some articles I’ve written, and it’s likely that the sting of wandering into a hornet nest does not entirely heal in the memory. But I won’t just point a finger at the scolds and say shame on them as though I am entirely innocent of the same thoughts and behaviors. Instead, my tears are tinged with shame at my own arrogance and lapses of good judgment, things I work hard to keep in check. I cling to my shame with a strong sense of purpose. My arrogance can be quieted by nudging myself towards humility and compassion, and my ethical inner editor can then paralyze my fingers and delay typing a public scolding. Oh, how I love being right and feeling smug about it. And oh how hard I work at gagging that insufferable snotty-pants Kim. I do it so often I’m getting duct tape burn on my lips.

We all wrap ourselves in the First Amendment whenever we are chastised for sharing our unadulterated opinions in public forums. But with freedom of expression comes a few responsibilities. It is no great accomplishment to simply shoot off our mouths, even if that basic right is stifled in some foreign countries under pain of imprisonment and death. True, we are very fortunate to live in a country where we can be absolutely horrid to each other—and anonymously so—across social media and beyond, without having to pay any consequences. But if the right to be bombastic is all we strive for in a free country, I’d say we are aiming a bit low. The burden is on us to dig deeper and extend an empathetic hand to anyone that needs it no matter how clumsily they’ve expressed themselves. This requires a magnanimous heart and a strong internal editor. It’s easier said than done. We can so glibly justify our bad acts.

A specific example occurred on this very forum, on a long and combative thread of indignant, wounded responders pounding on the mother of a quadriplegic daughter with MS whose inspirational, proud mother brag ended with an apparently inflammatory phrase that suggested we all must fight what MS has taken from us and make strides to accomplish our goals the way her immobile, now totally mute daughter has done. This was enough to raise the defensive ire of two people with MS who chose to read the most cynical interpretation possible into the remark, justifying giving a protracted scolding to this caregiver mother. It brought to my mind a scene from the 1931 film FRANKENSTEIN, in which the torch-carrying villagers chase the terrified, lonely, confused monster over cobbled streets to the windmill where they burn him alive while he screams “Why?” He just wanted to find a friend who understood and accepted him.

You might not think this is any big deal. After all, it's so commonplace, so ubiquitous, and so tantalizing when we see that irresistible box at the bottom of any social media page that invites our comments. But I stepped back to look at the bigger picture. A first-time visitor to our health site might read this 41-comment thread and feel so intimidated by the hostility that they are too afraid of getting bludgeoned by the hoard to risk posting their thoughts. I can’t say I’d blame them.

We seek out MS forums because we want a safe haven away from the cruel, insensitive, cynical mainstream. We want to confide in others who know what we are going through and who will give us gentle validation. When a wounded stranger opens her heart to us—which is quite an act of courage considering what ass-kicking she has probably endured from the world at large—it is our duty to treat her confession as though she is making a precious gift of her own flesh, a tender slice of a still-beating heart that we must cushion on the softest velvet and cradle with great care and concern. It is, after all, what we would want for ourselves. And if we write a few words that seem prickly and provocative, we would hope that the understanding others-with-MS would give us a mulligan or two. If we don’t ease up a little on each another, we are doomed to be alone.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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