Fear of the unknown does not absolve these parents for the decisions they made, or the repercussions those decisions may cause. But for those who have suffered for years with an undiagnosed chronic condition, this feeling of distrust is something we can understand.
The Cycle of Broken Trust
There are many readers who cannot understand why anyone would question their doctor. These men and women spent years of hard work and training to learn how to take care of others. They are the experts, why would we question them? The answer can be complicated.
For those who take the long road to a diagnosis, it is not hard to lose faith in the people who poke them, question them, then look them in the eye and say, “it’s nothing.” It is not uncommon for those with an undiagnosed chronic condition to be patronized or dismissed at least once during their search for answers. Then after years of pain, exhaustion, and frustration they are told that “nothing” was something all along.
Trust can be broken quickly and cleanly, but trust between doctors and the chronically undiagnosed is usually eroded away, slowly and over a long period of mistaken diagnoses and ineffective medications. It is often a vicious cycle, where both sides participate in putting up the wall between them until the relationship is irreparably damaged. And until both sides are willing to take equal blame for their role in the cycle, the wall will never come down.
The Doctors’ Role
Dismissing Patient Complaints
There are innumerable reasons that doctors fail to diagnose their chronically ill patients. Many of those reasons are completely understandable. But these excuses mean nothing in the face of the psychological and physical pain that a patient feels when their symptoms are attributed to stress, or poor lifestyle choices, or even a virus making its way around the community. There is a fear that comes with knowing a diagnosis of “idiopathic” means the illness no one believes is there will continue to wreak havoc on the chronically ill’s life. Instead of dismissing patients whose list of complaints seem to stretch endlessly on, stop and consider if there is one more test or one more question that could finally give them the answer they are looking for.
Sometimes it is easier to silence a symptom with medication than to investigate its underlying cause. Unnecessary antibiotics, anti-anxiety medications, and anti-depressants can cause more harm than good, and failing to explain the possible side effects of these prescriptions to patients puts them at risk for even more severe complications. The undiagnosed chronically ill do not want placebos; they want someone to listen to them, to understand that what they are going through is not “normal.” They want someone to help them.
The art of patient-doctor conversation has fallen to the wayside in an effort to meet the demands of today’s modern healthcare system. Physicians keep commentary on their decision-making process to a minimum, and when they do speak it is often in jargon that is well beyond their patients’ comprehension. This lack of open communication is the first misstep in starting the cycle of broken trust, as patients who feel patronized or confused may turn to less reliable sources for health advice.
If doctors want to help mend the broken trust between themselves and their patients, they must learn to be more open. They must be willing to believe that chronic complaints may not simply be a case of hypochondria, but a sign that there may be some underlying condition to blame. They should explain why they have ordered tests or what the prescription they are writing is for. They must make the effort to meet their patients halfway when it comes to discussing health without sounding like a medical textbook.
The Patients’ Role
Medical professionals are usually a favorite scapegoat of those who want to complain about the state of the quality of care that patients receive. But the reality is that we patients have played our own part in the cycle of broken trust.
Obsessing Over Health Information
Patients today have access to an unprecedented wealth of information, but this is a double-edged sword when it comes to researching our own health. For some, each symptom is a new harbinger of some exotic illness or deadly condition. Real concerns are drowned out in a sea of complaints that they bring to their doctor’s office. Patients must learn to prioritize and identify the symptoms that are life altering versus those that may actually be a seasonal cold. By whittling down the haystack, we make it easier for their doctor to find the needle.
Requesting Unnecessary Prescriptions
The over-prescription of antibiotics is increasing the incidence of drug-resistant “super bugs”, yet doctors continue to prescribe them for everything from a stubbed toe to the flu. They are only giving into their patients’ demands. A recent study showed not only that patients expect a doctor to give them antibiotics when they have a cold, but that they understood the antibiotics would not treat the viral infection they had. When patients pressure their physicians to prescribe unnecessary medications we only promote the culture of “placebo” treatments, and by acting like petulant children we invite doctors to treat us that way.
Patients must take an active role in managing their health. Some patients are too proud or too confident to admit that they do not quite understand what is happening to their body, or what the prescription they are holding will do. Doctors cannot answer the questions we never ask, so do not be afraid to ask questions. Patients should practice repeating what their physician has said using their own words, which allows for any misunderstandings to be addressed immediately.
For many patients, especially those who have lived with an undiagnosed chronic condition, it is difficult to trust the people who “lied” to them for years. But living in skepticism is not going to make their journey any easier. Those who have lost their faith in healthcare need to be open to the idea that most doctors are trying their best to serve their patients. If one doctor’s actions have alienated you from the medical field, it is time to find someone new and start again.
The measles outbreak has served as a catalyst for bringing discussions about doctor-patient relationships into the spotlight. A lack of trust in medical professionals is a societal problem, and parents’ decision to forego vaccinations because of this distrust is only one symptom of an underlying disorder.
It is time for both sides to put down their bricks and mortar, look over the walls they have been building up, and realize that they have forgotten something important. Patients are not the enemy. Physicians are not the enemy. Disease is the enemy. And the less we can respect and trust each other, the more disease will thrive.
“Dr. S” is a former patient of CrowdMed, and now is an active Medical Detective in our community.
If you’re also suffering from an undiagnosed medical condition, click here to find out more about how CrowdMed can help you finally get the answer you’re looking for.