How to Get Your Doctor to Take Your Undiagnosed Condition Seriously
Ellen Berry on 05 17, 2009
Imagine sitting in an exam room waiting for a doctor you haven’t met before to walk in. Whether you’ve got an unexplained stabbing pain in your side, crippling headaches or life-threatening heart problems, you’re hoping he or she will be able to figure out what’s interfering with your quality of life.
Not only are you in physical distress, you’re probably nervous because you’re there for an answer, and you’re not sure you’ll get one… or at least, the right one. And if you do, there’s no telling whether the answer will ease your pain and calm your fears or increase your pain and confirm your fears.
The person that walks through that door with the white coat could be kind, compassionate, intelligent, respectful, intuitive, knowledgeable, honest, experienced, responsible, willing, curious and thorough. Or they could be rushed, stumped, bored, ignorant, insensitive, rude, impatient, dismissive, harsh, deceptive, arrogant and careless. When there’s so much riding on one 15-minute interaction with another human being, it makes sense to expect the best and be prepared for the worst…
For insight into why doctors may not take you seriously, read “10 Reasons Doctors Don’t Take Undiagnosed Patients Seriously“.
The following are some strategies to help you set the stage for getting your doctor to take your undiagnosed condition seriously. Please keep in mind that not all of these strategies will work in every situation, and some may not suit your style of personal interaction with your doctor.
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Shop smart. Getting real help from a doctor truly comes down to finding a good match, so doing a little research before choosing a doctor can pay off greatly. Word of mouth is a good start, whether it be from friends and family, or from support group website forums. Websites such as Angie’s List and HealthGrades that rate health care will, for a fee, provide valuable information to help you make educated choices. Health insurance providers also may provide access online to the results of their assessments of facilities and physicians within their networks.
Doctors at teaching hospitals are often good resources, as they have been educated on the latest research and are usually medically curious.If you can, avoid seeking a diagnosis in an emergency room or outpatient clinic – staff there are usually more triage oriented with a “patch ‘em up and move ‘em on” approach, and don’t have the time and resources to do research or follow up.
Once you’ve selected a doctor you’d like to see, if possible ask your primary care physician for a referral. This can help gain credibility in the eyes of the doctor you’ve selected.
After the work you go through to find a doctor, get a referral, fill out the initial paperwork, provide medical records, waiting weeks or months for an appointment, etc. you may be inclined to keep going to a doctor who hasn’t inspired your confidence. So when planning in advance, consider making appointments with several doctors until you find one that you like, then cancel the other appointments (if your health insurance policy allows you to make appointments without formal referrals).
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Make an initial assessment. When it comes time for your appointment, come armed with a mental checklist of acceptable behavior. From your first impressions of the doctor, you may have a sense of how well the appointment is going to go – which will help determine which of the remaining strategies will be useful to you.
Does he or she greet you, shake your hand, look you in the eye, offer a warm introduction? Do they review the information you provide thoroughly, or skim over it? Do they ask why you are there and follow up questions? Is their attitude generally positive and open, or are they clearly impatient, bored, distracted or condescending?
If you get the feeling the doctor isn’t taking you seriously, put on your invisible Teflon armor and focus on staying strong and getting out the door. Keep things simple and fast, and try and leave with at least one helpful step forward, such as a referral or a prescription renewal.
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Know what you want. While you’re waiting weeks or months for an initial appointment, use the time to do some research into your symptoms, possible diagnoses and usual treatments. Try to be analytical about it rather than emotional, so that fear doesn’t interfere with your research. Use reliable sources of medical information, such as the links provided on this website. Develop a list of questions to ask the doctor. Not only will this help prepare you for your appointment, it will empower you in being responsible for your own health.
Consider hiring a mental health professional as a “coach” to support you in your pursuit of wellness. Having someone to listen, support, validate your experiences and plan with you can give you confidence, which helps doctors take you seriously.Be clear of what you want from the doctor. Do you need to know if a symptom is something to be concerned about? Are you seeking an initial diagnosis, or a second (or third, or fourth) opinion? Do you need to explore treatment options? Do you need your medications evaluated, a prescription for physical therapy, or a referral to a specialist?
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Be forthcoming. In addition to a list of questions, come to your appointment with all the necessary background information – copies of recent lab results or imaging reports, a list of current medications including dosages, frequency and purpose, accurate information about family history, surgery and vaccination dates, etc.
Answer the doctor’s questions honestly, and be sure to tell the doctor about anything that concerns you – even if you feel it is private or embarrassing.
If a doctor prescribes a behavioral change such as a different way of eating or exercising, or a medication or treatment, they have to trust that you will take them seriously and do your best to comply. Of course, always trust your intuition, and do some research first to make sure you can find evidence to support the doctor’s recommendations.
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Be open to the possibilities. Doctors have gone through extensive medical training and accrued many hours – or years – of experience working with patients. It’s possible that they know valuable information that isn’t easily found on the Internet, the local library or by word of mouth. Give serious consideration to what they have to say, even if it challenges what you think you already know. Your doctor will recognize your receptiveness, which will help him or her take you seriously.
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Have realistic expectations. Not every doctor is going to be a beneficial resource. It’s a numbers game, to some degree. So don’t expect to walk out of an appointment with a confirmed diagnosis and prescription for treatment in hand. It has been known to happen, but usually after several less successful attempts or months of testing and follow-up appointments. It is more reasonable to expect that you will make progress, and fill in another piece of the puzzle, than it is to expect a quick fix.
Doctors are restricted by medical ethics, laws, insurance policies and professional courtesy to provide only certain kinds of assistance within a scope of expertise. Asking a rheumatologist about something other than connective tissue diseases, or a nephrologist about something other than kidney-related diseases, will most likely be met with a referral to another specialist. In the same way, doctors may be unwilling to run tests that they feel uncomfortable interpreting. Be prepared for their refusal, and ask for a referral to a doctor who would be qualified to run the test.
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Communicate clearly.If you struggle to communicate with doctors because they intimidate you, or they use words with which you’re unfamiliar, or because your symptoms interfere with your ability to think clearly or remember what doctors say, bring someone with you to help you communicate, or bring written notes to give the doctor.
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Don’t mask symptoms. If you can do so without putting your health at risk, try to allow your symptoms to be visible when you go to your appointment. For example, if you get a stuffy nose every time you go to work, consider scheduling an appointment after work, and avoid taking decongestants until after your appointment. This will help considerably in gaining credibility in the eyes of your doctor, and provide instant information that can help with a diagnosis.
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Consider your presumptions. Sometimes situations are influenced by attitudes we carry, even if we don’t know we have them, or do our best to override them. If you encounter resistance from a health care professional, ask yourself if you’re not resisting their help at some level. If they dismiss you as though you’re not worth their time, ask yourself if at some level you feel like you deserve to be sick (of course, no one deserves to be sick). If they are condescending toward you, perhaps you are feeling like they’re better than you.The Law of Attraction, as described in the book and movie “The Secret,” can provide additional insight to these dynamics.
If you do discover a deep-seated feeling you didn’t realize was feeding your experiences, simply acknowledging it can begin a positive change. Saying daily affirmations like “I deserve to be fulfilled by a level of health that suits me”, “I’m open to receiving guidance for my highest and best from any source at any time”, and “I take responsible action on my own behalf. I make wise and educated choices for myself, and the results of my actions reflect my true worth” until you truly feel them at your core can transform any presumption.
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Consider their presumptions. During an appointment, it may become obvious that a doctor has made an assumption about you – perhaps that you have psychological issues that are causing your illness, that you keep going to doctors rather than accepting the reality of your health situation, or that you are seeking access to drugs. Speaking their language can sometimes help in overcoming these assumptions. Explain that you are seeking evidence that supports or refutes previous or potential diagnoses, and ask for their help in gathering the evidence.
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Uphold an attitude of gratitude. Feeling thankful for the opportunity to see any doctor, receive helpful information (even though it may not seem helpful at the time) and take action to support your own wellness can pave the way for desirable results from your appointment. It may take some effort, but try to find something to be thankful for in the situation, no matter the turnout. It will keep your momentum up, propelling you forward to the next opportunity.
For insight into why doctors may not take you seriously, read “10 Reasons Doctors Don’t Take Undiagnosed Patients Seriously”.
Comments (8)
Hello Ellen! Your article about Why doctors don’t take those who are undiagnosed seriously and how to change that situation are wonderful. May we have your permission to put them on the “In Need Of Diagnosis, Inc. (INOD) website? INOD is a 501(c)(3) nonprofit.
Thank you,
—Marianne
Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients.
Something I learned recently may be helpful when trying to find a doctor who will actually listen to their patient. I recently had the opportunity to look at my physiatrist’s notes in my chart. I was shocked, very upset actually, to see that he had not heard what I said, he had written things that were absolutely not true, written that he had spent most of the appointment “counseling” me. he had ignored the reasons I had been referred to him. In fact he had written that I had no complaint of lower limb pain or weakness, which was one of the main reasons I went to see him. There was so much more that was incorrect I won’t bother with describing it here. My point is that we have the right to see our doctor’s medical notes about us and we should do so. We cannot establish a good relationship if we do not know what the doctor is actually transcribing in our records about us. It is so very important to have a doctor who is paying attention, annotating the appointment properly and we as patients cannot acquire good medical care if the doctor is not paying attention to us and hearing us. Furthermore, this type of medical notes in my record had a negative impact on my disability hearing. It was incorrect information that the judge had to look at and if the information is wrong, the outcome will be a denial of benefits. Get your records! You have a right to have them. The distress this has caused me has been terrible, which of course exacerbates pain. Not only do I not get treatment for the problem, I have been given an additional problem made for me by the doctor whom I was supposed to be able to trust. Get copies of your doctor’s notes of your office visits. It is your right and your responsibility to know what is being recorded in your medical records that get seen by many people, other doctors and even judges. It can save time and help determine whether or not a doctor is suitable for you.
I was surprised to find that notes in an intake at an urgent pain clinic revealed that “The patient speaks tangentially” which hurt my feelings because I was only trying to be forthcoming, trying to give information that I thought would help. Instead I was seen as a talkative fool. I have learned that doctors and other medical personnel do not want voluntary information. It is better just to wait for them to ask precise questons and answer their in brief, concise and as if I don’t know anything at all about my body. How disappointing. The more I know the less I should reveal has been the unfortunate lesson learned by me. All of this information went into my medical records which the disability judge looked at and denied me benefits, in a large part because incorrect information had been recorded. I had a problem with my left knee, a torn meniscus, and it was recorded as my having twisted my right knee. Make sure the information is accurate and ask to see what has been recorded. Medical personnel make mistakes. Doctor’s handwriting is often difficult to decipher and when done so by another person it is often recorded incorrectly. get your records and have mistakes addressed at your next appointment. If corrected it can make a difference in your treatment outcome.
How unfortunate that the doctor saw your comments about your health as “tangential” and not “thorough”! Great advice, Nicole – thank you!
Thank you for this important guidance, Nicole! You’re right – it’s so important to get copies of all medical orders and records and review them! Lab Tests Online is a great website for understanding lab tests, and Aunt Minnie provides helpful information for understanding imaging tests.
As a medical professional myself, it is important for the patient to relay all necessary information. However, not to sound condescending, we don’t have much time or room on the history intake form to put EVERYTHING down. We don’t need nor want to hear a patient’s life history but rather the succinct and to-the-point info. Basically, it’s how long have you had symptoms, where does it hurt, past trauma?, etc. It’s difficult for the medical professional to condense a big sob story into pertinent information necessary for the doctor or whomever to diagnose and treat the patient.
Remember that doctors are not God. Medicine is still a mystery and can be sometimes perplexing even for the most well-seasoned and experienced physician. (Maybe that’s why the call it a ‘practice’.)
I DO most definitely agree with getting all and every single copy of results, records, etc., even if it costs you for “extra copies”. It’s NOT to make your OWN diagnosis but to have it for proof, in case there’s a discrepancy in billing or need it for legal purposes. Like it was said before, it’s a patient’s right to see and have one’s medical records. Just be very careful that you don’t get in over your head.
Sage advice, Adrienne – especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment!