To Be Invisible: The Neglect of Chronic Pain Patients
By: Mia Scemla
Chronic pain is like a blaring alarm clock. Picture your morning alarm abruptly waking you at 6 in the morning; you roll over and snooze the alarm. Then, it goes off again, and again, and again, until you’re awake. You can throw your phone, smash it on the floor, break it into pieces, yet its harassment never ceases. Chronic pain is an experience that only those who speak the language can understand, and I speak fluently. For the purpose of providing perspective, I will bring up matters of my own experience with my chronic pain. In this essay, the matter of experience is essential in understanding not only those with chronic pain, but the medical industry through which we navigate. Modern medical culture tends to psychologically explain chronic illness. However, even if the pain were “all in their head,” does that make the pain less real? Despite our medical industry’s remarkable proficiencies, it is unprepared to manage the overwhelming epidemic of chronic pain. Due to the absence of multimodal treatments and inadequate medical education, chronic pain patients suffer physically and mentally.
The National Health Interview Survey found that over 50 million people are affected by chronic pain, making it one of the most significant public health crises in the United States. Considering the enormity of the chronic pain epidemic, patients have compared their experience to a feeling of invisibility. Despite the commonality of pain, the medical industry is substandard in the treatment of its patients. This is largely due to the inadequate education that health care practitioners are receiving. Kruti Kmumar, a medical student at the Schulin School of Medicine and Dentistry, admits, “In the classroom, on the other hand, I’ve had a few hours on the basics of prescribing opioids for chronic pain, and even less curricular time regarding non-pharmaceutical treatments for pain, such as exercise, yoga, tai chi, and transcutaneous electrical nerve stimulation (TENS). The psychological component of pain, for example the correlations between depression, anxiety and chronic pain, has hardly been addressed. My experience is not unique.”
In other words, the medical educational system has failed to teach students, such as Kruita Kmuar, how to assess and help their pain patients, which is especially concerning as these future physicians are considered the first line of defense. A 2010 study found that around 80% of medical schools in the United States only require one pain session in the entirety of the education–unfortunately, not much has changed in the curriculum since then. Dr. James Giordana, A PhD and Professor of Neuroethical studies at the University of Oxford, and Dr, Mark Boswll, the Director of the International Pain Center at Texas Tech University, maintain that “So, while mechanisms of pain and analgesia are taught during basic neuroscience courses, there is no direct link to how the complexities of these systems are relevant to the illness of chronic pain and challenges of chronic pain management.” Basically, these well-educated professionals assert the essentiality of a quality pain education that the healthcare system so desperately needs.
The educational neglect cannot be attributed to the lack of information and research studies in chronic pain. Over the last two decades, significant technological advancements have widened the understanding of the complexities of pain. The development of computed tomography, which includes MRIs, PET scans, CTs etc., has significantly evolved clinical practice, going beyond what has thought to be possible three decades ago. In addition, the International Association for the Study of Pain(IASP) created a professional pain curriculum, which has been accessible for the past 25 years. Yet, despite these advancements, inadequate healthcare remains prevalent, which is–in part– owing to the deficits within the medical curricula.
By nature, pain is multifaceted. Therefore, it requires multimodal treatments, which the healthcare system has not provided. Chronic pain patients need an overarching treatment that tends to both the mental and physical health repercussions of their condition. For decades, doctors have prescribed opioids as a method of treating pain, which has catalyzed an ghastly epidemic of drug abuse, especially in the chronic pain community. The dramatic increase of reported chronic pain parallels the influx of reported use of prescription drugs. Commonly used as a short-term cure, opioids act like bandaids in the care of chronic pain patients. Seeking any kind of relief, patients are susceptible to addiction to opioid drugs. Instead of prescribing analgesics, doctors should approach pain management with multimodal treatments, considering both the psychological and biological components of a condition. Today, the National Pain Strategy emphasizes the importance of integrative therapies while acknowledging that pharmacological treatment alone is ineffectual in the treatment of chronic pain.
While commonly practiced medical treatments, including procedures and nonaddictive medications can be important, pain management requires noninvasive medical disciples, which include physical rehabilitation, cognitive behavioral therapy, transcutaneous electrical nerve stimulation (TENS), meditation, etc. Studies show the implementation of complementary and alternative medicine(CAM) has proved beneficial in the management of chronic conditions; yet, it is no surprise that CAM treatments are not covered by insurance, as they are perceived as nonessential alternative healthcare. Inevitably, this form of treatment is only available for those who are privileged enough to afford it. Thus, further demonstrating how the healthcare system lacks the integration of both invasive and noninvasive approaches that tend to all biological, social, and psychological aspects of chronic conditions. In my experience with chronic pain, surgical interventions and analgesics have had a dominating presence throughout my treatment. Like many other chronically ill patients, my pain is not derived from one source: I have multiple herniated discs, Bertolotti Syndrome, a fragmented vertebrae, an extra vertebrae, Scoliosis, and I will be recovering from a tumor resection in L4 and L5 vertebrates of my spine for the rest of my life. In a situation such as mine, it is evident that a multimodal approach is necessary to manage all aspects of my condition; however, no such treatment was offered to me and consequently, I suffered for years.
Chronic pain is like a garden. With each species of plant having different needs, its seeds must be sown, set in the right climate, and carefully managed, in order to cultivate healthy crops. Unfortunately, without a multimodal approach, the modern-day medical system has failed to create the right environment to cultivate relief for their patients, which has enabled a perpetual cycle of hopelessness, anxiety, and depression. Chronic pain greatly affects quality of life: school, work, family, and social life are threatened by long-term conditions. The lack of socialization, financial stability, and fear that the pain will never leave fuels the flames of depression. According to a study by the National Comorbidity Survey, relative to the general population, people with chronic illnesses experience higher rates of depression(20.2% vs 9.3%), PTSD(10.7% vs. 3.3%), and anxiety disorder(35.1% vs. 18.1%). Chronic illness is a life-changing condition, which engenders significant stress; restricted access to healthcare and a support system can further contribute to anxiety, depression, and suicidal ideation. Multimodal treatments, which include counseling and therapy, play an essential role in the management of long-term illness.
Due to the lack of education regarding chronic illness, doctors tend to label illnesses they do not understand as psychological issues. That being said, I do not deny the mind and body connection; however, it is mistaken to assume that chronic pain is solely a psychosomatic issue. Dr. John Sarno, a doctor in rehabilitation medicine, accredits chronic pain exclusively to the repression of emotion. In Dr. John Sarno’s Book Healing Back Pain: The Mind-Body Connection, he claims, “Patients often report pain in a new location as the old one gets better. It is as though the brain is unwilling to give up this convenient strategy for diverting attention away from the realm of the emotions.” Dr. Sarno’s perspective inevitably victim-blames patients, as it insinuates that patients are looking to find new pain due to their emotional repression. While I am sure emotional repression does not help, there is a difference between correlation and causation. Historically, doctors have blamed patients for their chronic illness: Multiple sclerosis was once believed to be a configuration of hysteria, Tuberculosis was thought to be a disease of young romantic souls, and certain variations of cancer were accredited to emotional distress. Unfortunately, if the healthcare system can not see or understand an illness, the patient is the problem. According to neuroscientist Dr. R.S Ramachan, “Pain is an opinion.” Yet, opinions are a choice, and pain is non-negotiable. Each case of chronic pain is different; however, the modern healthcare system is standardized in patients’ treatments: assess, diagnosis, cure. So how can our standardized medical system treat chronic pain patients effectively? Megan O’Rourke, author of The Invisible Kingdom: Reimaging Chronic Illness, insists, “ In chronic illness, the patient does not have a problem that can be solved quickly but a disease to be managed, physically and psychologically. Such illnesses can be intractable, messy, mysterious. And doctors don’t like to manage; they like to fix.” It is conventional for doctors to label chronic pain as a psychological issue, when what patients really need is a multimodal treatment that manages all aspects of the condition.
When my parents took me to the doctor’s office, they told me I should take Tylenol and I was probably just stressed or emotional. I had to go to a multitude of doctors to be taken seriously, until they found a tumor in my spine. This theme of dismissal has been prevalent throughout my life and the lives of many chronic pain patients. Physicians have told me: “Maybe this is a mental issue, try to see a therapist,” “There is nothing I can do for you anymore,” “You should try to lose some weight, you might feel better.” and “Perhaps your brain is just sending false pain signals.” At 16, I was even handed a book called, “Cognitive Behavior Therapy: How to Retrain your Brain in 7 Days”, effectively placing the responsibility for my treatment into the hands of a child. Doctors explained my illness to me as if I were the enabler of my condition. All I needed to hear was “ I recognize your pain and I believe you. I haven’t figured out how to help you yet, but I will,” but I heard no such thing. Evidently, the healthcare system lacks the ability to tend to all facets of chronic illness; consequently catalyzing detrimental physical and psychological repercussions. I talk about my experiences not to invoke pity; quite the opposite, I tell my story because I am one of 100 million individuals who struggle with “the invisible illness” known as chronic pain. As the dysfunctional dynamics of the healthcare system unfold before a patient’s eyes, they must remind themselves: although their pain may not be seen, it can be felt and that, well, that is real.