Salon recently decided to publish an article called “Big Pharma Says Your Mysterious Pain is Real.” It’s about fibromyalgia, and the growing acceptance among doctors that those who have it aren’t making the whole thing up. Seemingly, according to the writer, that’s a bad thing. And while the article makes a halfhearted attempt at portraying itself as an attack on Big Pharma, it really only takes a few sentences to realize, as already feared and expected, that it’s actually an attack on individuals living with fibromyalgia.
In the second paragraph, Robert Burton writes this, for example:
I can tolerate Pfizer’s endless ads for Lipitor, the cholesterol-lowering drug, because the ad is doing a public service. High cholesterol is a serious health problem. But watching the kindly middle-age actress interrupt the evening news to tell me that “my fibromyalgia is real” raises serious medical issues and underscores the ruthless drive of Big Pharma.
Because you know what’s not a serious health problem? Debilitating pain and fatigue that often can’t be alleviated with the help of pain medication. As someone who does not have that health condition, he should know. Also, how dare we tell the large scores of people, predominantly women, who have this very condition that they’re not just making it all up? After all, admitting that they’re not making it all up forces people like Robert Burton to feel a little less superior.
Then, we get this:
Let’s begin with a closer look at fibromyalgia itself. Despite strong convictions on all sides, nobody knows whether fibromyalgia is a primary medical condition, part of a larger constellation of other ill-defined conditions, such as chronic fatigue or irritable bowel syndrome, or a label given to a variety of physical complaints that arise out of various mental states, such as anxiety and depression. There haven’t been any reproducible and clear-cut objective findings, such as blood and lab tests, X-rays or anatomical abnormalities on biopsy, to provide a satisfactory understanding of the disease. Even the 1990 American College of Rheumatology diagnostic criteria — widespread muscle pain of more than three months, unassociated with other known illnesses, and the presence of at least 11 tender points over 18 muscle groups — are nothing more than subjective patient descriptions.
Wasn’t it really not so long ago that lots of people were convinced that both chronic fatigue and irritable bowel syndrome were all made up, too? In fact, I’m pretty sure that there are lots of people who think that people like me who have depression and anxiety are also just being a bunch of big fat whiners. But at some point, science apparently determined that people with all of these conditions weren’t outrageously delusional and didn’t deserve the scorn heaped on them. With fibromyalgia patients, however, we apparently just don’t have enough evidence to treat them like people.
For example, allowing patients to subjectively describe their symptoms? Whose zany idea was that? Of course, we can’t have the experiences of patients playing a role in their own care. Further, what could possibly be more vague than widespread muscle pain for more than three months, combined with the presence of at least 11 tender points over 18 muscle groups? Doesn’t pretty much everyone have those symptoms?
Oh, no, wait. They don’t.
Immediately after the hateful little diatribe quoted above, Burton then has the nerve to write this patronizing and disingenuous sentence:
By the way, I don’t mean to denigrate patients who experience pain associated with fibromyalgia.
Oh, I’m sorry, that might not be the height of intelligent and rational discourse. But it’s pretty much all I can muster to this kind of dismissive arrogance. Further, it’s a little bit difficult to want to engage someone in intelligent and rational discourse when they themselves have just spent a great deal of time cloaking their own bigotry, ableism and egotism in “reason.”
I don’t have fibromyalgia. So I can’t claim to even begin to understand what it is like. I have, however, had quite a few friends and family members who have the condition, two of whom I am/was very, very close with. And I have watched them live not only with physical pain that is frequently excruciating, but with the emotional pain of constantly being told that their pain is not real, and that they have no reason to be in pain, and that they really ought to just suck it up, fibromyalgia is totally fake, and why don’t they have a job, anyway?
And what is all of this for? Why, when it’s repeated in doctors offices and in conversation and internalized messages, does person after person find the need to write these types of articles reinforcing the idea of people living with fibromyalgia as fakers with imaginary pain? Just to find yet another reason to go after Big Pharma, regardless of the collateral damage, and the fact that the drug makers, generally evil though they may be, are providing treatments that people need? (In actuality, I think it also has a lot to do with the ableist desire of temporarily able-bodied people, who make up a significant majority of such writers, to express superiority over people with disabilities and appoint themselves as the real experts on their conditions.)
The words of Amandaw from almost a year ago, in response to a post a Jezebel that made a virtually identical argument only with lots of added snark, are particularly relevant:
Ignore the fact that the condition existed decades before Big Pharma ever caught wind of it, which puts a kink in the whole “Big Pharma invented it out of thin air to pad their pockets” line.
Because if it comes from Big Pharma, it must be a lie. Make sure you keep your eyes covered so that you never see the lives of the actual people in question, who make have quite a different story to tell you.
The real kick in the teeth is that even with all of his posturing about how pharmaceutical companies are exploiting patients and creating drugs that don’t work for conditions that don’t exist, Burton himself has to admit that, oops, clinical trials did show that the drugs work, significantly better than a placebo, and resulted in a partial relief of symptoms. Of course, many fibromyalgia patients will tell you that’s nothing at all to sneeze at, but Burton has science! And totally “objective” opinions!
Fascinatingly, though, I think that he somehow manages to save the most patronizing rhetoric for the end of the article:
If a patient believes that there is something “wrong with my brain,” the effects can be disastrous. Anyone who has been told of a possible abnormality on a lab test knows how hard it is to shake off that disturbing knowledge even when repeat studies turn out to be normal. If a single lab test result can generate persistent anxiety despite contrary evidence, imagine the degree of negative expectation generated in those with fibromyalgia when they watch the woman in the Pfizer TV ad claim “my fibromyalgia is real.”
Interestingly, he doesn’t note even the remote possibility that — after years and years of asshats like Burton telling them that their pain may or may not exist, but since there isn’t scientific evidence meeting his personal satisfaction that it does, it’s better for everyone involved to assume that it doesn’t — those with fibromyalgia may feel, rather than acute anxiety, a profound sense of relief. There’s no consideration for the fact that people who have fibromyalgia happen to know damn well that their pain is real, and thus an acknowledgment can in fact be very meaningful and a nice break from messages to the contrary that they might find on any given day in the likes of Salon. One can only assume that it didn’t even occur to him.
I also want to take a look at the intersectional angle here a little bit. I mentioned earlier that a significant majority of people with fibromyalgia are women. And anyone who’s done even the most basic research on the condition knows that to be true.
So what we have here is not only a man telling people that their lived experiences are invalid, because he thinks that some test results aren’t quite clear enough. We have a man telling women that their life experiences are not valid. We have a man telling women that their feelings don’t count, and that they’re overreacting. We have a man telling women that what’s they’re going through isn’t worth dealing with because it’s all in their heads. We have a man telling women that he’s the truly objective one, and they can’t possibly be rational in their understanding of what is going on with their own bodies.
We have a man telling women, essentially, that they’re being hysterical.
In any other instance, we’d call that misogyny. Here, we’d probably tend towards calling it ableism. I think it’s pretty clearly both.
[NOTE: Comments which are dismissive towards the experiences of people with disabilities, including people with invisible disabilities, will be deleted. They also just might get you banned. This absolutely, 100% includes those comments which argue that fibromyalgia is not real.]
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