The reluctance of many patients to confide fully in their physicians is a serious concern - with responsibilities on both sides. ProHealth recently conducted a survey asking the question: “Do you feel safe talking truthfully about your illness or symptoms with your doctor?” If the answer was “no,” respondents were asked, “Why not?”
Fifty-seven percent of those who responded said they did not feel safe – a startling, but not entirely surprising, statistic. More than half of those answering the survey said they don't feel safe enough to be honest with their doctors about their illness. On the positive side, 43% are comfortable and feel safe being truthful with their doctors. But when you consider that we are literally entrusting our lives to our doctors, the inability of so many to be honest with them is a serious concern.
Reasons We May Not Feel Safe
Following are the top 10 reasons patients gave for why they do not feel safe communicating truthfully with their doctor (in order of frequency):
1. Doctor doesn’t listen or care.
2. Doctor attributes symptoms to depression or other psychological problems.
3. Doctor doesn’t understand or believe in my illness.
4. Doctor doesn’t believe me.
5. Patient fears being labeled a complainer or hypochondriac.
6. Doctor trivializes my symptoms.
7. Patient fears being labeled a drug seeker.
8. Too many symptoms; doctor doesn’t want to deal with them all.
9. Doctor is judgmental.
10. Patient fears being “marked” by insurance companies.
Other reasons mentioned are that: patient fears that medications will be taken away, doctor tries to give too many medications, doctor is tired of hearing complaints, patient is in denial about illness, patient fears more tests being done, patient is embarrassed, patient feels there is a lack of confidentiality.
Things That Will Help Make the Most of MD Communications
Although the responsibility for most of these complaints appears to fall into the laps of the doctors, there are things we as patients can do to help improve communication with our doctors.
1. Educate yourself.
Long before you walk into the doctor’s office, learn all you can about your illness. A good doctor usually respects and appreciates patients who have enough self-respect to educate themselves.
If you are getting your information from the Internet, make sure you stick to reputable sources. Chat rooms and forums are great places to get support, but you can’t believe everything you read on them.
2. Prepare for your appointment.
Your doctor has a limited amount of time to give each patient, so anything you can do to organize your information will be appreciated. Make the following lists before every appointment and take them with you.
• Medications – List all medications you are currently taking. This list should include: prescription drugs, over-the-counter medications, supplements, herbal remedies, inhalers, and medicinal creams or gels.
• Symptoms – List all symptoms you experience on a regular basis. Describe the symptom clearly but try to keep it as brief as possible. Note when the symptom began, how frequently it occurs, and how it affects your life. If you list pain as one of your symptoms, describe the type of pain (that is, throbbing, aching, stabbing, sharp), the location of the pain, how long it lasts, and its severity (using the pain scale of 0 to 10 with 0 being no pain and 10 being the worst pain you can imagine).
Note: Avoid the temptation to say your pain level is 50 on a scale of 0 to 10. Although your intention is to have the severity of your pain taken seriously, it will have the exact opposite effect. If you exaggerate your pain level, your doctor will assume you’re exaggerating everything else as well.
• Questions – Write down all of your questions in order of importance. Don’t depend on your memory. Doctor visits can be stressful and you’re likely to forget something if you haven’t written it down. By asking the most important questions first, you ensure those questions will be answered even if the appointment has to be cut short due to time constraints.
Ideally your lists should be typed so your doctor doesn’t have to spend time trying to interpret your handwriting. Take two copies of each list to your appointment – one for you and one for your doctor to refer to during the appointment and then include in your file.
3. Think about how you speak.
When talking to your doctor, be specific; don’t use generalities. For instance, instead of saying, “My legs hurt when I stand,” try saying something like, “Whenever I stand for more than five minutes, I get a sharp pain that goes all the way down the back of my legs.” The second statement will give your doctor a much better idea of what you are experiencing and what might be causing it.
The tone and timbre of your voice is another important aspect of speaking to your doctor. The more calm and rational your voice sounds, the more likely your doctor will take you seriously. Try to avoid the two extremes: the whiney patient and the adversarial patient…
• Don’t whimper or whine. Sometimes people who are chronically ill will develop the habit of speaking in a whimpering, whiney voice without even realizing it. Unfortunately, no one likes to listen to whining. If you have children, you know how irritating it can be when they whine. Instead of causing you to want to do what they are asking, it only makes you want to get away from them.
When adults whine, we tend to consider them less credible. If you have any doubts as to whether or not you sound whiney, ask a family member or friend who will be honest with you. Practice explaining your symptoms in a calm, rational voice.
• Take the chip off your shoulder. If you’ve had negative experiences with doctors before, you may find it difficult to walk into a doctor’s office without having an adversarial attitude – and that attitude will reveal itself in your voice. Taking a “You’d better do what I want or else” approach will only cause your doctor to become defensive and label you a troublemaker.
Although you have the right to be listened to and treated with respect, you can’t demand respect. The more antagonistic your attitude, the less likely it is that doctor will listen to you or take you seriously. Try to give your doctor the benefit of the doubt and communicate in a calm rational tone.
4. Have realistic expectations.
If you have a chronic illness (especially one like ME/CFS or FM), expecting your doctor to give you a prescription or two that will relieve all of your symptoms is unrealistic. It usually takes a great deal of trial and error to figure out a combination of treatments that will help you.
It is realistic to expect your doctor to communicate honestly with you and work as a team with you in an atmosphere of mutual respect and cooperation.
5. Think like a consumer.
Remember, as a patient, you are also a consumer. You are paying your doctor to provide a service. Would you continue to go to a hairstylist or barber who refuses to cut your hair as you ask? Would you keep returning to an auto mechanic who insists nothing is wrong with your car, even though it doesn’t run?
We demand to receive the services we pay for in other areas of our lives, but often accept less than adequate service when it comes to our healthcare.
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Evaluating the Result
The responsibility for developing an atmosphere in which you feel it is safe to be truthful with your doctor is shared by both doctor and patient. You can only be accountable for your part of the communication. If you’ve given it your best effort, applying the principles discussed here, and still feel your doctor is not taking your concerns seriously, then it’s probably time to find another doctor. (See “10 Signs It’s Time to Find a New Doctor.”)
* Writer/advocate Karen Lee Richards was one of the founders of the ME/CFS and FM patient movement. She co-founded the National Fibromyalgia Association (NFA) with Lynne Matallana in 1997 and served for years as Executive Editor of Fibromyalgia AWARE, the first glossy magazine dedicated to ‘invisible illnesses’. Karen is now Patient Pain Expert for HealthCentral's ChronicPainConnection (www.chronicpainconnection.com), and is a long-time contributor on patient issues to ProHealth.com.
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.