Why Can’t We All Just Get Along?

The Unspeakable Bits From a Life With MS

I believe that most people with multiple sclerosis are really good people dealt a challenging hand by the fates and who are just trying to get through and help others along the way. Results of the most recent CCSVI study, however, have once again highlighted some rather nasty patient-on-patient treatment.

Over the years – and as social media interactions among people living with MS have increased – I have noticed some thoughtless, some insensitive and some downright rude behavior within the MS community… toward one another!

The recent internet uproar over Jack Osbourne and even reaction to a pharmaceutical donation to the Society in recognition of his Dancing with the Stars performance are another example of people lashing out at one another and at organizations trying to help us.

I suppose we could chalk some of it up to frustration. I know I get frustrated with my MS sometimes and the internet can be a relatively easy and anonymous place to let off some steam in a chat room or on a blog. But some of the comments I have read over the years have been far too sharp and pointy and very directly aimed for my taste.

“MS drugs are poison” or “they don’t work” isn’t helpful to someone looking for genuine assistance. And the way some people talk about how their positive attitude has helped them conquer their MS makes others feel like they are doing something “wrong.”

If something seems to be working for one person, it does not mean that it would work for everyone else, and it assuredly doesn’t give anyone the authority to push their point on someone else. But that doesn’t stop some people from shoving all the same.

I’m not what one would call a “practitioner” of any religious faith, but I understand what is intended and I appreciate the thought when someone offers prayers for me through my blogs or social media.  I am, however, always taken aback at the disrespectful comments that are hurled back and forth (from both sides of that topic) as soon as religion and MS is brought up. Seriously, I don’t mind someone offering healing thoughts for me; do you?

A recent blog discussion about issues surrounding death with dignity had people actually telling others how (and why) to live their lives with MS in a manner that went far beyond impolite and into the realm of arrogant.

Sometimes it feels like there are people just trolling the internet looking for someone to poke. My editor once told me, after a particular set of nasty comments, that “people seem to write things they wouldn’t say to your face … when they know you can’t punch them in theirs.”

It’s one thing to have to hear the litany of insensitive comments from those who have no idea what it’s like to live inside of this MS bubble.  To be attacked from within our own ranks is beyond the pale.

I’ll admit that some may lump me into the category of offender as I have always been what I call a “hopeful skeptic” of CCSVI and the “liberation” therapy and have not shied away from voicing my concerns.  I have, however, moderated my tone to make sure that it is no longer categorized as offensive by most.

Living with this disease has enough challenges, without us adding to them. I’m not saying “if you don’t have something nice to say, don’t say anything.” What I’m trying to say is that none of us is an expert in MS. If we’re an expert at anything, it’s at living our own lives – not anyone else’s life – with MS.  None of us knows it all, so we shouldn’t act the MS know-it-all.

We’re all in this boat together. Why can’t we all just get along?

Have you run across people being beyond rude online about your MS? How do you deal with it? Do you think you might be guilty of being rude sometimes?  How do you keep your feelings from being hurt on the interweb?

Wishing you and your family the best of health.


Tags Activism & Advocacy      7

Trevis Gleason, Blogger

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.