Because for the most part I’m surrounded, online and off, by people who are accepting and understanding of what’s happened to me, whether or not they even knew me before I got nerfed. And for the most part the silly or ignorant things that are said to me come from well-meaning people who are trying to be kind or polite. So it can be easy for me sometimes to forget that malicious prejudice against invisible illness really exists.
I thought this Skepticblog post by Steven Novella about a controversial treatment for MS was very interesting. For one thing, it reminded me of CFS “specialists” such as electrical engineer Trevor Marshall, who somehow manage to be the only person to discover a miracle treatment. In the case of chronic cerebrospinal venous insufficiency (CCSVI) in MS patients, the specialist is at least a physician, but that doesn’t necessarily make his setup any more legitimate.
I feel empathy for MS patients who are anxious to learn about a potential new treatment or even cure, but I also feel a sense of recognition with the potentially (or likely, according to Novella) premature clamor for this treatment. It’s very similar to the CFS patients who are getting themselves tested for XMRV — a test that is still not covered by insurance, but is in at least one case administered by a lab with connections to the institute that did the original study — or even treated with antiretroviral medication.
The part where I’m lucky comes in where I commented briefly as much on the post, which was met by two ugly responses by someone who can generously be called a troll. Yes, I do recognize that behavior, which according to the rules of the Internet mean I shouldn’t be upset by it. And I should deplore the outpouring of scathing responses as “feeding the troll” rather than taking delight and satisfaction in them. Yes, I was being a thin-skinned noob.
But what bothers me isn’t this particular person, really. It’s the general reminder of how people with chronic and mostly invisible illnesses are actually viewed in many cases. “There’s no evidence,” the troll snarked, because mostly we don’t look sick. As stupid as that sounds, and as obviously as this doucheturkey just wanted to garner attention, it is the reality for many patients much less fortunate than I am. When you hear of someone with CFS saying she wished she had cancer instead, it may sound shocking, but I can’t say I blame her.
Now that I’ve bummed you all out, I’ll send you off with what may be the best video ever. EVER. Paul sent this to me a couple of days ago and I cannot stop watching it. EVER. Prepare to die of cute, and then have a great weekend.
