Why are so many chronic illnesses difficult to diagnose?

Chronic illnesses develop slowly over a period of time. Symptoms come and go, leaving patients wondering if something is really wrong or if it's all in their head. When these patients finally do report symptoms to their doctors, the disease has usually been present for some time. By the time a patient gets in to see the doctor, the symptoms may have subsided, leaving the doctor wondering if it's all in the patient's head. It's like the car owner who notices a strange noise in the car, only to have it disappear when the car is taken to the mechanic, or like the toothache that disappears when you walk into the dentist's office. Medications may have been prescribed that masked the symptoms without ever getting to the root cause of the disease.

People who have one chronic condition usually have others, making diagnosis even more difficult.

By the time both the patient and the doctor are convinced that something is wrong, permanent damage may have already occurred. People who have one chronic condition usually have others, making diagnosis even more difficult. For example, a patient with a bad lipid profile probably also suffers from obesity, diabetes, and hypertension[1]. Coming to a diagnosis is even more difficult in diseases where there are no definitive lab tests to identify the disease. In these cases, doctors may arrive at a diagnosis by process of elimination.

Most doctors are trained in acute care. They see the problem, name it, fix it, and send you on your way. According to David Jones, MD, of the Institute for Functional Medicine, medical students are taught to quickly diagnose an illness and provide acute care for the symptoms; medical schools train future physicians for what will be about 20% of their practices, but 78% of today's patients present with at least one chronic illness.

How is the treatment of chronic illness different from the treatment of acute illness?

There are three major ways in which the treatment of chronic illness and the treatment of acute illness differ. The first is the goal of treatment. The second is the difference in the relationship between medical professional and patient. The third is the ongoing responsibility of the patient for his or her own health.

If you break your arm (acute condition), the treatment goal is obvious—set the bone, and immobilize the fracture with a cast until healing takes place. The treatment goal is to fix the fracture. If you have an infection caused by bacteria, such as strep throat, the treatment goal is also clear—kill the bacteria. Antibiotics are prescribed and administered. The infection clears, and the patient resumes normal activities.

Since chronic illnesses can't be cured, at least at this point in time, the treatment goals are very different. The goals of treatment in chronic illness are to minimize symptoms, long-term damage, and disease activity. While the course of action to achieve the treatment goals in acute illness is usually pretty clear, that's not usually the case with chronic conditions. People with one chronic disease often have other conditions, making the development of a treatment plan less cut and dried. The remitting/flaring[2] nature of many chronic diseases, coupled with the fact that symptoms may change radically over time, make finding the proper course of treatment even more difficult.

The second major difference in the treatment of chronic illness versus the treatment of acute illness is the relationship between the medical professional and the patient. In the acute case of a broken bone or an infection, the doctor is the authority, and the treatment is clear. If you are sitting in the emergency room with a bone that is broken or a raging infection, you are not going to negotiate treatment options! You rely on the doctor's expertise and follow the treatment plan without question. In cases of chronic illness, the patient and the medical professional(s) have to work as partners in managing the disease. The patient must learn self-management and become educated about the disease. And since there are no absolutes in the treatment of chronic illness, the patient and professional must develop a good working relationship with open channels of communication. Often, more than one treatment option is available. While you are not likely to debate the need for a cast, if you have a chronic condition you may find yourself debating treatment options with your doctor.

The third difference is in the role of the patient. It is the patient's job to follow the treatment plan faithfully. Medications must be taken as often as prescribed and according to directions. All the medicine in the world won't do any good if it is not taken properly. The patient must monitor symptoms on a daily basis and then be very accurate in reporting those symptoms to the doctor at the next visit. The patient is also responsible for lifestyle changes—rest, exercise, nutrition, and stress management—that can minimize the effects of the disease.

How does the doctor-patient relationship in chronic illness differ from the doctor-patient relationship in cases of acute illness?

The doctor-patient relationship in chronic illness is critical in managing the disease. Going back to the example of a broken leg, it doesn't much matter whether you have a relationship with that doctor; you just want the leg set. People with chronic illness see their doctors often, sometimes monthly, and so establishing a good working relationship is essential. Good relationships are based on openness, trust, and good communication.

Doctor and patient must both be open with one another. The relationship will not work if the patient is hiding vital information. That information might be alternative therapies the patient is trying, being honest about not taking medications or following the treatment regimen, disclosing all vitamins and supplements, or engaging in high-risk behaviors. The relationship will not work if the doctor is hiding information about the seriousness of the disease and what the patient can likely expect in the future. Be honest and open with your doctor. Part of being honest and open is making sure that your doctor understands that you expect the same honesty and openness in return.

Trust is essential in any relationship but especially as it applies to doctor and patient. The patient trusts the doctor to have his or her best interest at heart. The patient also trusts the doctor's training and expertise. With the amount of information and misinformation available on the Internet, patients often try to second-guess doctors. Open discussion is good. Believing that the doctor is engaged in a conspiracy to keep you from miracle cures is not. The doctor trusts the patient to report symptoms and changes accurately. The doctor trusts the patient to follow the treatment plan. Without this kind of trust there is no doctor-patient relationship.

Communication is as much about listening as it is about talking. Both the patient and doctor must listen attentively to one another. If you are unsure about what the doctor told you, repeat it back, and ask if you are correct. Ask for a clearer explanation if you need it. In a good relationship, the doctor will do the same for you. You have the right to a clear explanation so that you can manage your health. The doctor has a right to have clear communication from you in order to help you manage your illness. (More about communicating with your doctor in Question 31.)

If you are unsure about what the doctor told you, repeat it back, and ask if you are correct.

  • [1] High blood pressure.
  • [2] Periods of relative calm and periods of increased disease activity.
 
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