Image of a snake eating its own tail; via http://theunrecordedman.files.wordpress.com/2013/10/snake-eats-own-tail.jpg

Misunderstanding the Mind/Body Connection

Many people with chronic health conditions, chronic pain, and/or mental health conditions are well aware that the mind can influence how the body feels on both acute and more long-term levels. A Google search for “chronic pain and depression” brings up around 42 million results; it’s not surprising that mental health concerns are a problem when it comes to chronic physical health problems, whether mental health issues precede chronic illness or spring up long after a person has been dealing with chronic pain and illness. In many cases, mental health issues and chronic illness/pain affect each other, but for those who have both, it’s not so much a chicken-or-egg problem of “which came first?” rather than trying to deal with and manage each issue on an ongoing basis.

Yet, this is one aspect of chronic pain/fatigue and illness that many abled people–that is, people who do not have long-term experience with or who are not disabled by mental health issues, chronic illness, and/or chronic pain/fatigue–seem to not understand, or not want to understand. I’d wager that a lot of us with chronic pain and illness who also deal with mental health issues have heard conjectures like, “You must be in pain because you have [depression/anxiety/BPD/other mental health disorder],” or “I’ve heard that [Fibromyalgia/CFS/CRPS] is a form of depression,” or “Are you sure that your illness is not just stress?” These comments might be well-meaning, but they all operate from a place of ignorance; just as crucially, they misunderstand and grossly oversimplify the mind-body connection.

Not surprisingly, this misunderstanding has a history, and it continues to impact how many abled people view both pain conditions and people with these conditions. The idea of certain pain and fatigue-based chronic illness as primarily psychological–the latter of which still continues to be championed by some high-profile people in the medical field, such as the British psychiatrist Simon Wessely–finds its roots in the concept and (still) high profile of somatoform disorders. These disorders, all distinguished by physical or illness symptoms that cannot be explained by a medical diagnosis or by the patient’s “normal” medical test results, include hypochondriasis, conversion disorder, pain disorder, and somatization disorders. Patients with these disorders do feel real pain and physical distress, but since they do not fit the criteria for existing illnesses that can be ruled out with additional testing, they are diagnosed as having a somatoform disorder. 

Chronic pain and fatigue conditions that manifest similar symptoms (often with “no known cause”) to those of somatoform disorders–such as chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, complex regional pain syndrome, and others–are very often thrown into the category of supposedly being caused by some sort of mental illness. Some in the medical field, like the aforementioned “expert” Simon Wessely, believe that fibro, CFS and IBS are all the same thing, and that they are caused by unchecked mental illness on the part of the patient since these illnesses lack one unifying “cause.”

Others, like Dr. John Sarno, have formed the backbone of their entire medical practices from the dubious (mis)application of the mind/body issue when it comes to chronic pain and psychological problems. Sarno is well-known for his take on chronic pain conditions, which he calls manifestations of Tension Mitosis Syndrome. TMS is a term that Sarno coined; according to his theory, chronic pain supposedly starts in the brain–from the patient’s “repressed” emotions such as anger or sadness–then shows up as all-over body pain, or TMS.  Sarno’s theory presupposes that the brain makes up chronic pain as a way of dealing with repressed emotions–and, ultimately, that chronic pain is primarily psychological. Not only is this weirdly reminiscent of the popular idea that chronic pain conditions are “really” somatoform disorders, but as skeptical blogger Jeff Orchard details in a post at Skeptic North, it’s pretty terrible science as well. Sarno’s theories are also shockingly out-of-step with new information about conditions like fibromyalgia–which, contrary to “popular” medical and public opinion, is not “just depression,” but has a significant neuropathic pain component that may provide a key as to why the illness is so painful for so many people.

The general public seems to have a similar opinion on the matter of “mysterious” chronic illnesses and pain conditions that actually exist as distinct from somatoform disorders, as DI’s own s.e. smith wrote in 2009’s “It’s Your Fault: Socially Acceptable Disability and Popular Causes”:

Fibromyalgia is, I think, another great example of how Americans cannot deal with medical conditions when they cannot attribute fault or find a causative agent, bundled in with some serious sexism. Although it affects all genders, it is often assumed to be a specifically “female complaint,” and it’s laden with the double burden of being a “faker’s disease” in the eyes of the American public. Who are apparently incredibly knowledgeable about medical issues, especially treatment options, judging from the ever-helpful advice they provide people with all the time. When you can’t point to a causative agent of a condition, people are less likely to accept that the condition actually exists.

And while it’s been well-established that people with chronic illness or who deal with chronic pain and/or fatigue are more likely to deal with anxiety, depression, or other mental health issues, what many abled people do not seem to realize–or want to understand, really–is that some mental health effects can be an outgrowth of dealing with chronic health problems every day, and in some cases for many years. All of the simplified disability simulations in the world cannot even touch what it’s like to be debilitated by chronic pain, illness or fatigue and deal with depression or anxiety or another diagnosis at the same time; you can only truly understand what the mind/body thing is like for people with chronic health conditions if you are living with it. If you aren’t, it’s easy to say things like, “Well, if I were in pain and depressed, I would just exercise!

But saying things like that–or offering it as “helpful” advice–is missing the point; if these well-meaning folks were in pain and depressed, they would have very different reactions. That’s one of the things that many people miss (and misunderstand) about the mind/body connection(s) in chronic illness, fatigue and pain: everyone is different, and though there are some commonalities, it’s complicated. Even article titles like “Is It Medical or Psychiatric?” reinforce the idea that mind/body issues in chronic pain are an either/or question, when the truth is more complex.

This reinforcement of either/or–and of the idea that some chronic illnesses are “really” psychological conditions or mental illnesses–has recently been cast into the national spotlight with cases such as that of 15-year old Justina Pelletier, who was diagnosed with a rare mitochondrial disease only to later end up in a psychiatric ward with a diagnosis of somatization disorder.  Earlier this year, Pelletier was placed in state custody when Children’s Hospital of Boston contacted child protective services, after they began to suspect that Justina’s parents were guilty of “medical child abuse.” It is easy to think that the misapplication of the mind/body issue is only a rhetorical one without real consequences for PWDs of all ages, but the pattern of chronic illnesses being dismissed as “really” mind-wreaking-havoc-on-body disorders does, in fact, have consequences that are frighteningly real.