In my crusade against the idea of “chronic” illness, I have spent a lot of time thinking about the institution of a diagnosis. As anyone who has ever been diagnosed with a chronic illness remembers, the day we received that diagnosis created indelible memories. In the instant the words were heard, the trajectory of our lives changed. We refocused our entire mental and emotional outlook. Amazingly, for most of us this reorientation does not happen at the onset of symptoms. Rather, it happens when symptoms are put into the cultural diagnostic machine and a prognosis is given. As vulnerable patients, that diagnostic prophecy becomes more powerful than we ever imagined a few words could be.
Why does a doctor make a diagnosis?
A diagnosis is utilized to give a name and subsequent understanding to a set of signs and symptoms. This is a shorthand way for doctors and healthcare practitioners to communicate with one another quickly and easily. A diagnosis helps give a framework to a choice of treatments, whether they be surgery, medication, diet, exercise, etc. By grouping people together based on signs and symptoms, physicians attempt to develop standards of care. Implicit in the diagnosis is a set of expectations of the progression and intensity of symptoms and the likelihood of recovery. This is incredibly useful, and for those of us given a diagnosis with a great prognosis, we are happily resigned to the institution and the safety and comfort it provides.
However, a diagnosis of a chronic condition comes with dire economic and emotional consequences, not to mention the physical ailment that predicated the original trip to the doctor’s office. A chronic disease usually refers to a disease that is long-lasting and recurrent; or as a more callous doctor might put it: “something you will have forever.”
This term is so frequently used in disease descriptions that the Center for Disease Control, (CDC) reports that one in ten Americans suffers from a chronic illness, accounting for over 25 million people. The CDC also states that “chronic diseases accounts for 70 percent of all deaths in the United States and that the medical care costs of people with chronic diseases account for more than 75 percent of the nation’s $2 trillion medical care cost.”¹
The economic impact is not surprising because once there is a diagnosis of chronic illness, in the eyes of most doctors and insurance companies, there is no way to get rid of it. The CDC mentions that healthy lifestyles can prevent the onset of chronic conditions, but there is never a mention of completely healing the condition. Perhaps the time has come where rather than dwelling on the lasting impact of chronic conditions, we need a different way of perceiving illness so the diagnosis does not continue to be a self-fulfilling prophecy.
Diagnosis is Universal
Diagnosis is not limited to Western medicine. All healing modalities have some mechanism for evaluation, diagnosis and treatment. By grouping people together by way of symptom, constitution, or pattern, healthcare practitioners attempt to develop standards of care, with varying flexibility within those standards based on the modality being employed. Without any potential for this kind of predictability, each illness would be seen as completely new, and physicians would have to reinvent the wheel each time.
The challenge for Western medicine is the same as any form of established healthcare: how does a doctor/physician/healer understand the problem, make a diagnosis, give the treatment, and answer the question almost every patient wants to know: “What can I expect?. The truth is each patient is unique and no one knows for sure how that person will respond to any intervention, natural or otherwise. And yet, prognoses are given and patients tend to become attached to them. Every medical system struggles with this problem of individual uniqueness while respecting trends of the entire population.
In cases where people fit the diagnosis and respond favorably, the diagnosis is part of an efficient and effective treatment process. Most sick patients yearn for the apparent predictability provided by the medical model because they want to hear a good prognosis. “If other people have healed, surely I have a chance.” At its best, we find it comfortable to know we are not alone and that there is a name and treatment standard for our signs and symptoms. We tend to crave this kind of predictability. We want to know what to expect. We are even more overjoyed when the corresponding treatment for the diagnosis works for us.
Diagnosis Turns Bad
The same mechanism behind a desire for positive predictability complicates a troubling diagnosis. If you receive a diagnosis of a less-than-hopeful outlook, you are now given a new list of expected behavior and outcomes:
- Eat less sugar or else you will go blind…
- If you don’t stop typing, you’ll need carpal tunnel surgery…
- Take these medications if you don’t want to die of a heart attack…
If the diagnosis is one of a chronic illness, then no matter what we do, we are told we will never be able to shed that diagnosis. The seeds of illness are expected to remain, even if symptoms resolve. The expectation is the likelihood that we will manifest illness in a particular way will always be there. What might have been an easily treatable and manageable symptom foretells future maladies: we are stricken powerless with the expectations of a chronic diagnosis.
When we hear we have a particular condition and we will have it for the rest of our lives, we can be devastated, regardless of whether symptoms are controlled or not. The power of naming a set of symptoms takes on a life of its own. What begins as an innocuous trip to the doctor’s office turns into a harbinger of doom. The cramping becomes Polycystic Ovarian Syndrome. The pain in the hands turns out to be arthritis. The excessive burping becomes (GERD) gastroesophageal reflux disease. The lingering cough becomes asthma. The diagnosis becomes a major hurdle to overcome (on a very tangible level, people who have been given a diagnosis of a chronic condition know how difficult it can be to acquire health insurance on their own).
The problem is not necessarily the actual diagnosis. Elevated blood glucose levels are a good indicator of diabetes. The science behind the lab test and its correlation is not usually suspect. In fact, part of what Western medicine excels at is identifying problems, sometimes very early on. Lives are saved, infant mortality has declined, and emergency care may have never been this good anytime in the history of the world. The problem is the prophecy of the prognosis.
A diagnosis, especially one of a chronic condition, can be dis-empowering. The diagnosis is an incantation inhibiting the natural potential of our healing abilities. This neutering can literally destroy lives as the diagnosis becomes the seed of a self-fulfilling prophecy. The diagnosis of a set of signs and symptoms does not guarantee the symptoms will exist in the next moment, or a moment five years from now, or even twenty years from now. Of course, believing the diagnosis does mean that creates an ideal environment to make sure the diagnosis is correct.
After my diagnosis of inflammatory bowel disease, I saw myself as being broken. My body was in disrepair and the mechanic told me it will never be what it once was. I began to wonder what the purpose was of living a life that will never allow me to be completely healthy. I thought this for years until it finally dawned upon me that perhaps I am more than my diagnosis. Where the diagnosis spoke in generalities, I finally refused to lose my identity, my present and future, to fit under the umbrella of the “usual prognosis.” This did not heal my intestines immediately, but for the first time since D-Day (diagnosis day), I gave my body a new blueprint to work on.
We have to remember despite the strong emotional reaction many of us have, a diagnosis is an impersonal categorization. The bad news is this impersonality does not usually take into account the individual’s subtle differences. The good news is the diagnosis does not take into account the individual’s subtle differences. This means we do not have to be constrained by a diagnosis. The peculiarities of who we are might be precisely what enable us to defy the diagnosis.
Chinese medicine, with its roots in Taoism, and its focus on the ever changing dynamic balance of yin and yang, emphasizes treating people as they are at any given moment. As an acupuncturist, I may give someone a different treatment at nine in the morning than if they had an appointment at five p.m.; the patients dominant energies are different in the morning than in the evening. These dominant energies are going to interact with and manifest their imbalances differently. I may also suggest someone come in at a particular time of day, month, or year, to optimize their own natural rhythms. This focus on the individual recognizes that each moment is beaming with potential energy for change and transformation.
The human body is not a static, perfectly predictable machine. We are a dynamic interplay of our emotions, environment, body and soul. When a medical system recognizes this, it blows the roof off what is possible. Enlightened treatment is designed to capitalize on our innate potential rather than trying to thwart it. I foresee a future that combines the natural treatments as the first-line and proactive approach, along with incorporating the modern scientific and medical advancements for acute care and major, post-trauma, intervention.
In order to heal, we will have to unlearn the illness expectations. Within the diagnosis paradigm of a chronic illness, total healing is not possible. Living beyond illness, even chronic illness, means we are willing to disobey the expectation that we will be sick and open the door for total healing to begin.
And then, perhaps we will be living in a new world of medicine where we treat ourselves as dynamic individuals, experiencing life one moment at a time, without being attached to what happened before or what will happen in the future. One glorious breath, enjoyed one inhalation after another.
Source: 1. http://www.cdc.gov/NNCdphp/overview/htm#2 (January 19,2009)