Being Attacked From Within

February 13th, 2011 by Jules Leave a reply »

If you “live” in any capacity on the internet, you’ve probably run into “trolls”. For the sake of clarity, I am referring to those who appear to be going out of their way to be mean and rude online. There are those who vigilantly monitor certain bloggers, waiting for an opportunity to comment and say some pretty dick things. When one does any form of online interactions, these things are expected and one has to grow a thick skin if they are going to survive the nasty that the internet can be from time to time.

As of late, I have been running into these situations with greater frequency. Not only have I been hounded by woo “practitioners” and “doctors” on Twitter anytime I mention Lupus, I’ve received what could be perceived as death threats for my pro-vaccine work and association with atheists and skeptics (this is quite peculiar) but most recently, I’ve been receiving emails from these quacks trying to sell me their snakeoil. There are days where I feel like I’ve slipped through the rabbit hole and I have to make a very conscious effort to breathe and not let it bother me or detract me from doing the various things that I do online. I was well aware these things occur. I just never imagined I’d be in any position where I’d be trolled on what has now become at least once a day. Yes, I know there are others who get it worse. Point is, I always thought I would fly under the radar as so many do. I’m probably very naive.

It takes me very little effort to shake off the above incidences, after the initial “WTF BUTTERCUP!” sends my brain into a tizzy. But what happens when these trolls are those within your own community? In the most recent situation that has me really bothered, it is within the Lupus community. An anonymous troll, who’s goals are opposite than your own, is very easy to laugh at. Especially because they lack balls. But when these attacks and/or pieces of misinformation come from within what is normally a very tight circle, it becomes very disheartening and takes a lot more contemplation to figure out how to address the situation.

The other day, I received an email from a fellow lupus warrior who was quite upset over a blog post. Apparently, this blog post is causing quite the stir in a lot of online lupus support communities because our struggles have been shat on. (Click the clip to the left to read the blog in question).

I was asked if I wouldn’t mind weighing in and giving my point of view on what was said in this post.

First, I’ll start by posting a video of the talk that is being attacked. Some of you may have already seen this talk as I’ve tweeted about it, have posted it on Facebook and it gets shared quite often amongst fellow lupies.

When I shared this video, I said something to the effect of, “Pretty good video explaining a bit of how I tackle my day with lupus.”

Notice, I used the words “explaining a bit” and “pretty good”, meaning the video doesn’t exactly describe my own struggles and there are a few things that I have some issue with. That being said, the video still has merit. In fact, there are a lot of people who think this video is great, as it articulates their struggles quite accurately and in a simplistic fashion. Because of these reasons and because no two lupus patients are the same, it is a video I’d recommend. It helps to bring a wider understanding to this disease and what it means for some people who have to live with it.

Lupus is different for every one. I do not think I can stress this point enough. Some people only experience minor annoyances because of it, some people lose all ability to walk, talk, have to have organs removed, need weekly chemo therapy, have strokes and heart attacks, and the list goes on.

I think one of the parts I found most offensive about the above blog is the following (there are a lot more venomous comments):

Christine hands her friend the spoons, and tells her that the spoons are basically her health/wellness, and asks her friend to talk her through a typical day in her life. She then starts taking spoons away from her for every tiny task she does, saying things akin to ‘you can’t just get out of bed, you idiot. People with Lupus need to haul themselves up on a pulley system’.

By the way she’s illustrating the severity of even the simplest tasks I’m thinking to myself, “biotch you need to take better care of yourself if the consequence for brushing your teeth too hard is a day in bed”.

What she wrote completely negates what is a very real situation for a good number of those who live with lupus. Just because this writer was lucky enough to not ever have to experience relearning how to walk, talk, dress, eat, get on and off the crapper, shower; does not mean these things cannot and do not happen. For a good number of people, that is their reality. For a good number of people, they spend a good part of their day trying to muster all of their strength just to stay awake, never mind be productive. For the most part, I take damn good care of myself and regardless, I have many days where it takes me at least 2 hours to drag my sorry ass out of bed, because that is just how bad my lupus is.

For those who’ve had to fight the really dark sides of lupus, they need to know that is safe to be honest about these things and talk about it. Not only for their own sanity but in order to raise awareness. Just because you can acknowledge the shittastic that is lupus does not mean you are dwelling on it or that it is consuming you. It means you are being real about your situation and have the strength to face things head-on instead of trying to run and hide from the truth. It does not mean you cannot see the light in the dark. I think I can be a good example of that. After all, lupus has tried to kick my ass from many possible angles and I continue to do some pretty amazing things despite my daily struggles. I can be honest about it and I know it allows others to feel safe in facing and fighting their own lupus demons.

I may not agree with a number of things Christine has said, either in this video or on the website that she runs. That does not mean her experiences are not valid and real. It just means we have different experiences and deal with things differently. My personal opinions also do not invalidate the community of lupus patience who do find comfort in Christine’s video and writings, because that is also their reality. And when you live with something like lupus, any amount of finding a community of those who you can relate with does wonders to help you cope and get through your day to day.

Bottom line, this video is a good tool to illustrate one of the thousands of faces of lupus. And I’m very disheartened that one of our own (wow, doesn’t that sound snobbish and elitist) has attacked in such a fashion that will undo a lot of awareness for this disease. I’m worried that it may leave some thinking, yet again, lupus is not that bad and people who bitch about it, are hypochondriacs.

Way to shit upon people’s real experiences and their reality, Diana.