Guest blog from Dr. Maury Joseph.
Dr. Joseph is the cofounder of the INSTITUTE FOR EMOTIONS AND HEALTH in Washington DC, a center dedicated to the diagnosis and treatment of Medically Unexplained Physical Symptoms. For more information visit http://iehdc.com
Medically unexplained physical symptoms (MUPS)—somatic problems that may be driven by the psychological factors—have a high financial and emotional cost. In my work with MUPS I meet people who have spent years visiting medical doctors and other allied health professionals seeking diagnostic explanations and cures. They have often spent a great deal of time and money before finally exploring the possibility that their symptoms might have a psychological basis. During those years they missed experiences with family members, lost jobs or earning potential, and suffered greatly. With each failed medical treatment their frustration was renewed. This frustration was often channeled into the body, making symptoms worse.
Some MUPS are treatable with psychotherapy, so I have tried to become an advocate for the use of psychological diagnostic and treatment procedures early in the differential diagnostic process. It pains me to hear stories of lost time and increased frustration, when I know there is a chance that psychotherapy can help. The ability to help people avoid needless suffering and loss has been a major motivator for me in my choice of career and in my decision to specialize in the treatment of MUPS.
Despite my efforts, and the efforts of other professionals and researchers, there are many barriers, both systemic and psychological, that prevent people suffering from MUPS from consulting with mental health professionals. In this blog post, I will explore the barriers that I have encountered in my work with people suffering from MUPS, with the hope that these ideas might help people with MUPS seek a psychological evaluation and/or treatment earlier in the diagnostic process.
The endless search for a physical explanation
Some people with MUPS will continue to seek medical testing and treatment, and there is nothing inherently wrong with that. There is always the possibility that a new test or new doctor will reveal a healing insight. However, I have often see that after the first or second-line tests and treatments have failed, testing becomes more invasive (e.g., spinal tap), and treatments can become even more extreme (e.g., surgical implantation of a deep brain stimulator). People might also move away from Western medical approaches, and seek relief in herbs, oils, or acupuncture. There is nothing wrong with any of these approaches, so long as they work. But when we continue to pursue somatic treatment strategies, despite repeated failures, this becomes a barrier to or avoidance of pursuing a treatment that could work: psychotherapy.
False hope can be promoted by the efforts to try yet another test, or yet another medication, or yet another homeopathic treatment. If the roots of the symptoms are in emotional factors, this hope will be dashed every time as long as emotional factors are not being addressed. This strictly soma-oriented approach can be perpetuated by what has been called “defensive medicine”—the tendency of healthcare professionals to offer tests and treatments that may not be necessary, with the hope of avoiding later liability for charges of negligence. A physician practicing defensively may exhaust all tests and treatment options even when emotional contributors become evident early in the diagnostic process. This contributes to the cycle of hope and disappointment, and to the distraction from potential mind-body explanations.
Sometimes a diagnosis is found, but it is not helpful. For instance, in medicine, the term “syndrome” is used to describe a cluster of symptoms that tend to coexist or appear together. It seems that many symptoms that do not have a medical explanation—an understanding of why and how they are happening—are labeled by the what of a “syndrome”. These syndromes include Irritable Bowel Syndrome (IBS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (CFS), and many others.
Any diagnosis can provide some psychological relief, but unfortunately these syndrome diagnoses and others tell us very little about the origins of the symptoms, or, perhaps most importantly, how to most effectively treat them. Also, a comparison of the lists of symptoms of IBS, POTS, CFS, and many other such syndromes have a high degree of similarity to lists of anxiety symptoms; the only difference being that the syndromes are dressed up in medical or somatic terminology. When we mislabel anxiety and other emotion-driven symptoms as a medical syndrome, we can distract ourselves from the possibility that psychotherapy may be the treatment of choice, which can lead to more wasted time and effort.
Sadly, by the time patients with MUPS get to my office, they are usually pretty burnt out on seeing doctors. They often have very little faith that I, as another doctor in a long line of doctors, will be able to offer them anything. It seems that each time a patient sets about a new course of testing or treatment, this stirs up positive feelings of hope towards the potentially helpful doctor, which may then be repeatedly dashed. Sadly, people can begin to cope with this pattern of disappointment by deciding to empty themselves of hope. They come to their first sessions with me with profound doubts about the potential that therapy can shed light on their physical problems, and often figure I’ll just be another let-down.
This hopeless stance makes total sense given their experiences; at the same time, the hopeless stance can be a barrier to full engagement in the therapy, which can limit results. We tend not to fully invest in causes that we feel hopeless about, and when patients feel hopeless about their ability to recover they may not be optimally committed to the consultation or therapy process. That is why, very often, we will have to spend some time during the treatment of MUPS reflecting on the hopeless orientation and mourning the losses that brought the hopelessness about, thus increasing the possibility that therapy can help.
Who to trust?
Finally, and perhaps most worrisome, is the damage that can occur to people’s sense of trust when they are struggling with medically unexplained physical symptoms. Their trust has often been broken by several treatments or possible diagnoses that they put their faith in, but even worse, they can begin to have difficulty trusting themselves. “Is this all in my head?”, “Is it my fault these treatments aren’t working?”, “Do I dare trust another treatment?” are all questions that I have encountered in working with people with MUPS.
The great potential of a psychological consultation with someone trained to diagnose and treat MUPS is the opportunity for the patient to take back some of the authority about deciding what is really driving their suffering. During the consultation process with me, you will either observe a link between your emotions and your physical symptoms or you will not, and it will ultimately be up to you to decide whether you a) see a connection, or b) want to do something about it together. You will be invited to trust your own eyes and your own self-observation, so that you can make conclusions about the emotional and physical reactions we observe together. You will be actively involved in the diagnostic process, and, if you come to find that there is a treatable link between your emotions and your MUPS, you will be invited to be actively involved in your treatment.
Some suffering in life is inevitable. Our bodies break down and get sick no matter what. However, the physical suffering that is caused by emotional factors like anxiety, conversion, and somatization are avoidable with the right treatment approach. It pains me to see people go from specialist to specialist without improvement, often winding up in the ER or bedridden at some point, losing their relationships, careers, and other important life opportunities. People sometimes continue down this route for a lifetime, but I hope this post, other posts on this site, and the rapidly growing research base for the psychotherapy of MUPS will help healthcare professionals, patients and their caregivers in the pursuit of proper diagnosis and treatment.