How to Get Your Doctor to Take Your Undiagnosed Condition Seriously

on 05 17, 2009

Patient waiting in doctor's exam roomImagine 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.

  1. 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).

  2. 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.

  3. 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?

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. 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 (27)

 

  1. Ellen says:

    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

  2. Ellen says:

    Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients.

  3. Nicole S says:

    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.

  4. Nicole S says:

    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.

  5. Ellen says:

    How unfortunate that the doctor saw your comments about your health as “tangential” and not “thorough”! Great advice, Nicole – thank you!

  6. Ellen says:

    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.

  7. Adrienne C. says:

    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.

  8. Ellen says:

    Sage advice, Adrienne – especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment!

  9. Nicole says:

    I would never make the mistake of thinking that a doctor is god-like in any way, and much of medicine is not a mystery, it is science. I expect a doctor to listen to me and work with me because it is my body and i am paying for a service when I consult a doctor. If it were a mechanic I was consulting about a car problem, I would expect the mechanic to listen to me and determine the course of action together. I expect the same from a doctor. if the doctor doesn’t have an answer, he/she should say so and allow another doctor to do what she/he cannot do.
    I recently ended up in a specialist’s office out of state because no doctor would diagnose a condition I explained repeatedly to them, gave them everything needed to make the diagnosis so that I could get the help I needed before it progressed to a stage of irreversible damage.
    I was right, the doctors were not listening to me and now I have stage III of a particular disease, and there is so much damage and additional pain and still I am not getting therapy needed because my doctor is dragging her feet with the needed referral.
    I cannot accept being careful to not get in “over my head.” Since it is ultimately my mind that must make the decisions regarding my health care it is only “over my head” when information remains unexplained. I have never considered doctors to be anything more than professionals in a specific field, like plumbers or climatologists or architects, they are professionals whose time is compensated.
    There exists nothing that is “over my head.” Had I not pursued this and simply accepted the “I don’t know what it is but it isn’t that” that I was hearing from doctors whose egos were more important than an accurate diagnosis, I would still be being biopsied and poked while the scholarly medical documentation was being ignored
    Trying to give an accurate amount of information in a short period of time to ensure prompt but safe treatment in the ER is my responsibility.

  10. Tammi W says:

    I just left a doctor’s office – a “specialist” who was going to finally help me. He basically, after just a minute in the exam room, asked if I spend much time on the internet looking up the disease that I tested positive for because he doesn’t think I really have it.
    Now, it’s not that I WANT any disease, but after years of no diagnoses, any diagnoses at least makes you feel less crazy! I tried to convince myself that doctors don’t think your “whining”, that they are just trying to make sense of it all. Then I read this. When Adrienne C called a patient’s tale of suffering a “sob story”, it hit me. Doctors DO think you’re whining. We tell them ALL this, because we are told that IF we tell them EVERYTHING, it helps them help us… and we are DESPERATE.
    So much for that. I’m so discouraged. There really seems to be no help out there if you have been too sick for too long.
    Live with it or die with it. I guess that’s what we do. If there is another option, I don’t know of it.

  11. Ellen says:

    Tammy, I’m so sorry to hear about the difficult time you’ve had. I recognize well the discouragement in your post. If you would like to send me an email with the details of your situation, I may be able to provide some helpful resources and strategies. Also, check the bottom of my home page for the best online resources I’ve found.

    Ellen

  12. Tammi W says:

    Hi, Ellen. I just this afternoon discovered this site. I don’t know how to find your home page. Any tips?

  13. Ellen says:

    You can click on the Take Us Seriously logo at the top of this page or click this link. .. Scroll down to find the resources. ..

  14. harold says:

    The observations that Nicole made were right on point, and reading the comment by adrienne c, the medical professional, really showed what kind of arrogance is coming from the field. Doctors are supposed to work for their patients, the fact that we have to act or portray ourselves a certain way to get them to take proper care or attention is really disturbing to me.And, then we have to worry about how they are portraying us in their notes, because one doctor can change the perception of another just through their notes.
    If you have ever been through a health crisis that has taken a long time to diagnose you know the agony and desperation that kind of situation can cause, and it’s not always a fair time to comment on someone’s loquaciousness, unless it has some direct connection to health or diagnosis. I’ve also noticed that lately they are very quick to hand out an SSRI, before looking into other issues, like thyroid etc. I have seen the service go down hill in the last several years and I think part of the problem is so many of us feel powerless because of what is at stake during a visit, and medical staff are not being called on their poor service.

  15. Ellen says:

    Thank you for your comments, Harold. I agree that medical professionals must meet their patients where they are, not require them to come to the doctor’s level. We don’t know what all the info means, or which details are important, therefore, we shouldn’t be dismissed or penalized for having more details to share than other patients. Not to mention health conditions that impact psychological state, and therefore ability to communicate clearly… And yes, too many psychiatric drugs and diagnoses are being handed out before eliminating possible physiological causes. The truth is we do have power to advocate for ourselves, but we must research, evaluate, and prepare to get the most out of each appointment — and remember our power to choose. There are resources on this website (and elsewhere) that can help us get the most out of medical care.

  16. Katy says:

    Wow, can’t believe I stumbled across this website…I am currently trying to keep my sanity while trying to get well. I was “diagnosed” by some quack with a GI condition, but some doctors seem to think if you fall under that umbrella, nothing else can be wrong..
    One of my doctors suspects appendix issues and I have the atypical symptoms, but no one believes me. I wouldn’t be surprised if both conditions are acting up simultaneously, but because I don’t have the cookie-cutter symptoms with my appendix, no one will look twice at me.

    I am beyond frustrated and feel like I’ll be sick forever…it’s impossible to get a doctor who will actually look at me as a person and take the time to figure things out.

  17. Ellen says:

    Hi Katy…

    I’m sorry to hear you’re having a difficult journey right now. Please know that you’re not alone. If you would like to send me more details about your symptoms and history, I’d be happy to do some research that may help you work with your doctors and/or improve your quality of life. (I’m not a healthcare professional, but know some good places to do research online). Please use the Contact Form to reach me. In the meantime, hang in there and keep looking for the right doctor — they make all the difference.

    Dr. Feldman at Cedars Sinai in California is exceptional, and I believe he will do over the phone consultations. Here’s his info:http://www.healthgrades.com/physician/dr-edward-feldman-2cbk5

  18. Mitt says:

    I have a big issue. I had rotator cuff surgery 5 months ago and have completed 15 weeks of physical therapy. I do have use of my arm again but it hurts every day all the time. Sometimes I have to stop doing activities- driving, swimming, carrying groceries, ect and just let my arm rest and put Ice on it. It hurt so bad a couple of times that it brought me to tears and once I ended up in the ER for pain relief. When I tell my surgeon how much pain I’m in he does not take me serously and his PA says that he wo’t prescribe any more pain meds for me. I don’t know what to do other than go see another dr. It just sucks that I have along with my insurance paid this surgeon over 40,000 dollars and they refuse to relieve my pain. They did give me a cortizone injection that really relieved my pain for about 7 days, bu tnow it is hurting agian. I would say it is severe pain. I am a registered nurse and I understand other methods of pain relief and I have tried guided imagery, distraction and staying busy, ice packs, heat, physical therapy, and massage. I have not tried yoga or biofeedback. I used biofeedback years ago for anxiety and it helped but I do not think it will benefit me for pain relief. Does anyone else have any other recommendations. I’ll try anything as I can’t live with this pain anymore.

  19. Ellen says:

    I’m so sorry to hear you’re in so much pain. You’ve done a great job finding ways to manage it.

    I’m not a medical professional — just a patient with lots of experience — but do have some suggestions:

    I would seek a new doctor to do some imaging to make sure there isn’t infection, foreign objects, etc which might be contributing.

    There’s a treatment called joint laser therapy that I get at my chiropractor that works beautifully on inflammation, although I don’t know if it will be able to go deep enough — the doctor could assess that.

    You may want to consider the possibility of Reflex Sympathetic Dystrophy as a potential complication resulting from your surgery…

    Another treatment, Calmarett.com, is amazing for nerve pain. I recommend Dr. Cooney in New Jersey.

    High dose magnesium (600 mg a day of magnesium malate – other forms of magnesium can cause diarrhea) is often very helpful for any form of nerve pain.

    Keep in mind you don’t want to mask symptoms of an underlying problem, so best to figure out what’s causing the pain first…

    A physiatrist might be helpful as well…

    Ellen

  20. Neya says:

    This site.. just floored me. I’ve been waiting months for some kind of answers. I’ve been to so many doctors, and currently see my urologist and gynecologist at least once a month. We do tests.. I take meds.. NOTHING CHANGES! I’m so sad alot of the time.. I have scheduled with a psychologist in order to maintain any sanity I have left!

  21. Ellen says:

    Neya, thank you for writing. I’m very sorry to hear that you’ve had a difficult time finding answers. I would be happy to offer what help I can as a long-time patient who knows reliable resources for research, or please check the bottom of the home page on my site for these resources, which I rely on. You’re welcome to send me an email, and we can talk more about the details of your situation. Please hang in there, make sure you have a good support network, and hunt down those doctors who really care and have the answers you need. There’s somebody out there who does!

  22. Abbi says:

    I can’t seem to get past a medical professional referring to a persons condition or acount of their issues a “sob story”. I understand I need your help, please take the time to listen, I am paying for help.

  23. Ellen says:

    Hi Abbi…

    I understand why this would be hard to get past. Clearly professionals who refer to “sob stories” are struggling with burnout, and have lost their sense of empathy and medical curiosity. But hang in there and keep looking for doctors who are both knowledgeable and compassionate — they do exist! and we all deserve to be treated with respect.

  24. We been trying to get a test for megabalistic blood cells ever since the hospital said some years ago that my wife red blood cells are bigger than normal, but She had tests since and they say they are the correct size now, but my wife had a stroke last year, this was caused by plaque and she had to have a operation, but what I found out is, megabalistic blood cells can stick to the walls of the arties and cause plaque.
    They say that her B12 was lacking and asked her if she drinks alcohol, she said no, so the only other reason would be she cannot absolve the b12, this is the transic factor but they won’t have this, what can we do. She takes at the moment B12 under her tongue. This helps but I believe she should be on injections of B12.

  25. Jennifer says:

    Such a breath of fresh air to hear that I’m not alone in being brushed off for so long. I just keep getting passed around from one doctor to the next and the things they say to me make it very obvious they’re not listening and just don’t care. My body has gone to hell in the last few years and I know my body well enough to know that most of these things have to be related. They won’t even consider the possibility that I might be right. Apparently all sorts of things just decided to start malfunctioning simultaneously and there’s no connection. Ugh. So frustrating. I just want someone to listen and believe me.

  26. George says:

    Ironically, reading this makes the panic set in.

    I really hate that doctors have no intention of listening to you and instead want the simplest information that can allow them to make the simplest decision and ignore all that’s wrong.

  27. Ellen says:

    Before you panic, remember you have a choice in how you respond — to everything. Allowing yourself to entertain fearful thoughts and feelings will get you more of the same. Keep in mind that fear and love cannot occupy the same space, so list all those who love you, who have treated you right, who have your best interest at heart, and who you love (including yourself). Following love will lead you to improved quality of life, if not healing and wholeness, and to doctors who truly care. I’m living proof!

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