The Road To a Healthy Recovery – What Does That Mean?

Over this past month, I have had a lot of calls and emails from people seeking my suggestions on how to ask their doctors  about getting tested for a possible pituitary disorder. Others have asked me why they are not doing better, now that they have had surgery.

Well, this is the toughest part of being a patient advocate. It’s sad, depressing and frustrating to hear many horrible stories of doctors that won’t even give their patient the benefit of the doubt and test them for a pituitary hormonal disorder. Or, I hear that the medical professional did an improper evaluation and started the wrong line of treatment and the patient doesn’t know any better. So six months or a year later they are worse off than they were a year ago and the doctor blames the patient for his/her mistakes. The worst of it is when I hear a patient tell me they have had surgery, but they are not feeling better, and their doctor tells them that once the surgery is done, from there on out it’s not the doctor’s problem… OH MY GOD PEOPLE, let’s stop the madness! It doesn’t have to be this way!

I recently heard from a woman back east who said she had pituitary surgery for Cushing’s disease. She is not feeling better eight months after surgery. I asked her:

Q. What were your cortisol levels after surgery?
A. I don’t know.

Q. Are you on steroids?
A. Yes, my endocrinologist said I will need them the rest of my life.

Q. Why? Did your surgeon take your entire pituitary gland? What size was the tumor?
A. I don’t know if the surgeon took my entire gland and I don’t know the size of the tumor, but my endocrinologist told me I will have to be on steroids for the rest of my life.

Q. What did your neurosurgeon tell you after surgery?
A. That everything went well.

Q. That means nothing to me and it should mean nothing to you. Did you read a surgical report or the pathology report?
A. No.

Q. Have they tested all your pituitary hormones since surgery and when did you last do a 24-hour urine test to measure your cortisol levels?
A. I’m not sure if they have tested my hormones but I have not done a 24-hour urine test since before my surgery.

Okay, do you think there is any reason why this patient is not feeling better after surgery? Absolutely!!! I’d be more surprised if she told me she was feeling better. First of all, I don’t blame her completely because her doctors should have educated her, but if she had taken responsibility for her health, she would have known important information to help her get proper follow-up care following her surgery.

I am not blaming her doctors completely either. We need more public awareness, and the media needs to help us communicate the prevalence and seriousness of pituitary diseases. I believe if we educate the public, it will force the medical community to step up to the plate and educate themselves about pituitary hormonal disorders.

So let’s dissect my conversation with this woman, which by the way is the same conversation that I have with far too many patients.

Q. What are your hormone levels after your surgery?
A. This is important! Regardless of the type of tumor, you should know what your surgeon did at surgery and what is happening hormonally. This will help you understand your recovery.

If the doctor starts you on hormone replacement after surgery, ask why. Make them tell you why and show you lab results. If you did not have Cushing’s, why are they giving you steroids? Are they just being cautious? Did the surgeon do something to the gland and now it’s not working? Do they think you will be on them long? Who will you need to follow up with about the use of steroids? If you had Cushing’s, did your cortisol levels drop below 4 before they started replacement? Did they test your cortisol every four to six hours? And the list goes on… But my point with this question is — know what your hormone levels are after surgery, what they should be, and why.

Q. Did your surgeon take your entire gland? What size was your tumor?
A. This is a very important conversation you have with your neurosurgeon BEFORE surgery. The goal for the surgeon should ALWAYS be to save the gland. And 95 percent of the time the surgeon should be able to save the gland and it should still be functioning after surgery. This is when you get a second opinion, if a neurosurgeon tells you they may take the entire gland. Get another opinion from someone who does a lot of pituitary surgeries. And always know the size of the tumor. Size does matter!

Q. What did your neurosurgeon tell you after surgery?
A. Everything went well??? What went well? Well because they simply took the entire gland? Well in that they got the entire tumor? Well because they’ve not done enough surgeries to know that it didn’t go well? Please make sure you know what is being said. Get a copy of your labs after surgery, a copy of the surgical report and the pathology report. Go over them with your neuroendocrinologist.

Q. Have they tested all your hormones after surgery?
A. This is really, really, really  important. Please keep copies of the results, and know what the results mean.

I understand this is a lot of work but this is not something that can be left to chance if you really want to have a healthy recovery. YOU have to know what no one is going to tell you — especially if you don’t ask.

Just because we have not done a good job as a society at educating our medical community about neuroendocrine disorders doesn’t mean this disease is any less horrific than dealing with recovery from cancer, heart disease, or any other life-threatening illness. We have to really stand up and be our own advocates. I will tell you from what I have seen first-hand for the past ten years with patients and recovery: there is only a handful or two of medical professionals who are going to really understand you and take time to educate you or be proactive with your follow-up care after pituitary surgery. So please, educate yourself!

Many blessings,

Sharmyn McGraw
Patient Advocate, Pituitary Support Group Facilitator, Published Author, Professional Speaker

For a little bit of fun (I figured we could use it), I initially created a discussion thread on the National Organization for Rare Disorders (NORD) Community Forum with this title, and it turned out to be a popular place to share crazy-making comments from health care professionals in dire situations and sad circumstances. Being able to find some humor it in seems to mean a lot to patients just trying to feel better…

• a patient who is undiagnosed, searched a long time to get a diagnosis, received a wrong diagnosis, or have a diagnosis and struggle to get effective treatment and support?
• a health care practitioner who has learned through experience valuable information that you wish more patients knew?
• a patient advocate or support group leader?
• a health care support worker in health insurance, pharmaceuticals, medical device manufacturing or clinical laboratories?
• a life coach, psychologist or medical coach?

I’m writing a book…

If you have a story to tell about your experience with health care that you believe would help others find better health care sooner, cheaper or easier, please contact me. I’m writing a book that is a guide to making smart health care choices, and I know that the wisdom learned from your experiences is valuable and should be shared. The published stories will be general enough to protect the privacy of all involved parties.

I’m looking for stories that taught you:

• the great things and not so great things about how the US health care system currently works
• an important lesson about yourself and your health
• patient stories and health care articles that have been published on the Internet that you found were very helpful
• tips and strategies for getting doctors to take patients seriously
• inside secrets of the industry that you know would help patients get better care
• examples of outstanding health care professionals
• positive, memorable experiences of healing, happiness and the value of life

You should know:

• Confidentiality will be observed. No story published will reveal specific information about patients, doctors, medical facilities or contributors.
• As the contributor, only your first name, last initial, city and state will appear in the book.
• Please only provide details you don’t mind sharing with strangers.
• I will give you an opportunity to review your story for accuracy and privacy before I submit it to a publisher.
• By submitting your story, you agree to allow me to publish it in one or more books, provided you are notified that your story will be published in each book.
• To protect the confidentiality of others, stories should only be submitted by the person who experienced them first hand.
• All stories will be reviewed by medical professionals or patient advocates to make sure the information provided will be of good use for patients.
• It is possible this book will never be published, or that your story may not be included in the final publication. Submitting your story does not guarantee it will be published in any book.

How to submit your story:

If you would like to find out more, or submit your stories, contact me by email. Please provide a 1-2 paragraph summary of your story, and be sure to explain why your story would be important for patients seeking quality health care to know. Include your first name and an email address or phone number where I may contact you if I have questions about your story.

Let’s work together as a community united in caring to create a great guide that supports, encourages, educates and inspires patients who deserve the best quality of life they can have!

Ellen B., the Bullet Point Blogger
Read more about me…

Although I have successfully applied my new understanding to many aspects of my life, it has taken almost 30 years for me to get clear on my health. From the age of 14, when I first developed unexplained symptoms, until now at the age of 42, I have seen over 100 doctors. I’ve tried traditional medicine, Eastern medicine, chiropractic, raw food diets, intensive exercise, discontinuing all medications, taking many medications, taking herbs and supplements, fasting, different spiritual faiths and practices, counseling, and ignoring symptoms entirely. Only recently have I realized that I attracted in my experiences of poor health and disappointing doctors through strong feelings and prolonged thoughts that defeated my best intentions.

My breakthrough came a couple months ago, when I went to a doctor’s appointment to see a new rheumatologist. For the previous year I had chosen not to make any more doctor’s appointments, because I wasn’t making any headway. In the meantime, I did a great deal of research until I found information that I felt would be valuable to a knowledgeable doctor. I requested the referral from my primary care doctor, waited six weeks to receive an appointment date, and another six weeks for the appointment. In the meantime I obtained medical records, organized my file, and documented my current medications, medical history, family history, current symptoms, what treatments had or hadn’t worked, and what doctors I was currently working with.

By the time the day of my appointment came, I had a lot riding on it. I believed that the diagnosis of an autoimmune condition called Sjogren’s Syndrome, which I had received 8 years before, could explain many of my symptoms. The tricky part was that many doctors have a limited understanding of it’s potential to affect the whole body, and therefore didn’t consider my symptoms to be relevant. I hoped the doctor at Wake Forest would review my notes and files, consider the possibility that Sjogren’s was the culprit, and perhaps prescribe a standard therapy. It wouldn’t be a lot to ask, if the doctor was familiar with what Sjogren’s could do to the entire body, and was willing to work with me.

Instead, the doctor didn’t even review my medical history, go over my notes with me, verify my medications, discuss my family history, or review the medical records I arranged to have sent to him. Instead, he poked and prodded a little bit, said that there were only two connective tissue diseases that cause a lot of pain and I didn’t have them (I don’t know how he knew – he didn’t test for them). He asked me if I was depressed three times, and asked about counseling twice. And he “turfed” me, referring me to a pain management doctor with a “wastebasket diagnosis” that implied it was all in my head. He made me feel like I might as well just give up and resort to managing the pain for the rest of my life, rather than receive proper treatment.

Although this had been my experience time and time again, from doctors who were intimidated by my overlapping symptoms, too impatient to look deeper, or quick to write me off as mentally troubled, this time I chose to fight back right then. I went directly to the head of the clinic and expressed my frustration, anger and disappointment, and didn’t leave until I felt I had achieved some sense of resolution. Taking decisive, positive action on my own behalf must have been the turning point for me, because shortly thereafter I had a breakthrough.

After I returned home from that upsetting event, as my feelings and thoughts still churned with frustration, I suddenly was inspired to pause for just a moment and ask myself a question. What did that experience reflect back to me? However that experience made me feel, I must have felt inside at some level to have it mirrored back. I thought about it for a couple hours, and realized that during that appointment I felt like I wasn’t worth the doctor’s time, energy, commitment and support. So perhaps, at some deep level, I didn’t believe I deserved to be helped?

The next day I was preparing to attend a meeting of a great group of positive people, many of whom understand the Law of Attraction. We support each other in setting our intentions and envisioning the manifestation of our desires, according to the science of how it works. I brought a vision board with me – a collage of pictures reflecting what we want to attract into our lives. It’s like a visual shopping list of our deepest desires.

As I began to describe to the group why I had chosen pictures of Paris, ballroom dancing, going on walks with friends, and swimming with dolphins, I realized that many of the pictures I had chosen for my vision board were of things I had already done! It occurred to me that I missed the purpose of the vision board – to think big for the future – until I realized that those pictures said loud and clear that I wanted back the life I used to have. The freedom to travel, exercise, and have fun without pain.

I suddenly started crying in front of the group (not something I do often) as, for the first time in my life, I felt like what was happening with my health was unfair. I had always been strong… a survivor… kept fighting… but had never acknowledged my true feelings – that I didn’t deserve to be sick. At some level, I blamed myself for still being sick, or for becoming disabled in the first place. In that brief moment of powerful feelings, I let go of a simple misconception that had been the source of my grief for so long.

Since that revelation a month ago, I have had two excellent doctor’s appointments that allowed me to make significant progress towards feeling better. In fact, the next appointment I made, which was with a rheumatologist I had seen once before, met with all of my expectations, exactly as I had envisioned.

My newly-acknowledged truth — that I deserve to get better — flows through me and gives me strength now. The switch was flipped, and my clarity acts as a conductor to the manifestation of my desires for health and wellness.

The great lessons I’ve learned from this are:

• We attract the health care experiences we have.
• If we look at what our experiences cause us to feel, and ask what other experiences make us feel that way, we will discover what is interfering with our success.
• Although making smart choices in doctors, and being willing advocates for our own health is always important, an understanding of how the Universal Laws work will make all the difference in how quickly we find answers.
• Any path will work. Whether we pursue traditional medicine, integrative or alternative medicine, psychotherapy, raw food diets, Internet research, energy work, prayer or any other modality of treatment, we will find the healing we desire.

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 followup.

   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”.

For suggestions on how to proactively address these obstacles and increase the chances of proper diagnosis and treatment, read “How to Get Your Doctor to Take Your Undiagnosed Condition Seriously.”

1. Think horses, not zebras. Doctors are trained and conditioned to look for the most common explanation, not the unusual one, because for the most part they deal in mainstream conditions that are reasonable easy to diagnose. In medical school they are taught “If you hear hoof beats in the park, think horses, not zebras.”This is generally good advice, since most of us who come in with a stomach ache or high blood pressure expect our doctors to treat the condition in a straightforward manner, not leading us down a rabbit hole of possible diagnoses. But when common symptoms mask a underlying problem that is unusual, this way of thinking can be just as dangerous as it can be efficient.
2. By the book. There are established protocols or “recipes” for many conditions that instruct doctors on step-by-step procedures for identifying, diagnosing and treating. If a patient’s symptoms don’t match a protocol he or she is familiar with, the physician will be inclined to “turf” or refer a patient to another doctor who is more likely to be familiar with the protocol.
3. Professional courtesy. There are invisible lines between doctors that they are taught not to cross.  If a specialist such as a nephrologist (kidneys) or endocrinologist (hormones) tried to treat your aching joints or a heart problem, he or she would be stepping on the toes of a rheumatologist or cardiologist…and they would be trying to practice in an area for which they haven’t received formal training. The referral system is in place to help prevent this and extend professional courtesy. Coming in to see a new doctor because a doctor in their group referred you means you’re more likely to be taken seriously, because you’re participating in the local physician’s buddy system. This can be a problem if you choose a specialist based on Internet ratings or word of mouth and walk in “off the street”. If you are “doctor shopping”, and while under the care of one practitioner you decide to go to another practitioner of the same kind and expect them to work together, this is a likely way to have one or both of them fire you as a patient.
4. Revolving door. To stay in business, physicians have to keep the door revolving to appease health insurance companies and pay their employers or their own bills. So they allot a certain amount of time which includes the actual appointment, but also answering the phone, filling prescriptions, and other tasks related to an individual patient. Therefore, allowing medical curiosity to inspire researching potential diagnoses or creative problem solving, in their mind, detracts from time that could be provided other patients. Taking patients seriously takes more time.
5. Clear communication. A language barrier exists between most patients and doctors. A physician’s effectiveness is dependent on how well the patient communicates with them, describing symptoms using words that mean the same to both doctor and patient. For example, a headache could be described as stabbing, dull, throbbing, pressure, tightness, burning, tingling or radiating. But if a patient has never experienced throbbing pain, they would not be able to confirm for the doctor if that word describes their pain.
6. Shooting in the dark. Lack of pertinent information forces doctors to work in a vacuum. If patients provide limited or incorrect information about patient medical history, family medical history or current symptoms because they don’t know, don’t remember correctly, are embarrassed, or haven’t recognized a problem they’ve been living with (such as snoring) as a related health problem (sleep apnea), a physician is challenged to make a correct diagnosis.
7. Self preservation. Manipulative patients who are trying to get the doctor to do something for them such as prescribe medication, diagnose an uninsured friend by reporting the friend’s symptoms as their own, etc. do genuinely undiagnosed patients and their doctors a major disservice. Other patients may want a doctor to “fix” them without having to do anything themselves such as changing their diets or taking medications when appropriately prescribed. Such abusive and uncooperative patients can burn a doctor enough that they avoid any case that looks like it’s gone nowhere before.
8. Limited liability. Some doctors avoid making a diagnosis because of the increased liability and cost to their practice in regards to health insurance. They selectively choose patients they can treat with ease. Others are unwilling to run tests because they don’t feel comfortable interpreting the results. Or they avoid following up on tests requested by other doctors because they don’t understand the context in which the tests were requested, and don’t want to be accountable for decisions made by others.
9. Too much work. Sorting out overlapping conditions, an unusual combination of symptoms or complex cases can be intimidating to any medical practitioner. If you have a thick medical file, or a long list of previous doctors, a doctor may think “if other doctors haven’t been able to help her, I probably won’t be able to either”. This is especially true if the doctors you’ve seen are at respected medical facilities like Mayo, Shands, Cleveland Clinic, Johns Hopkins or Cedars Sinai. Or, the doctor may be simply stumped and unwilling to do the necessary research or confer with other doctors.
10. Head cases. Some doctors consider specific diagnoses to be red flags to warn them that patients may have mental problems or represent other kinds of “trouble”. (Fibromyalgia has had this stigma in the past, but is now receiving increased validation from the medical community as a “real” syndrome). The relationship between thoughts, emotions and physical ailments is real and tangible. A perfect example is thinking of someone close to you who died… The thought creates sadness, which leads to tears. Thoughts can be so powerful as to give a woman who isn’t pregnant all the symptoms of pregnancy. Doctors witness the power of thoughts and feelings on our bodies every day. If medical tests come back negative, or symptoms are not visible or reproduceable during the appointment, they can’t rule out the role our heads and hearts play in our health. Their own belief and value systems contribute to the decisions they make about us and why we’re sick. They may look at us and identify real mental or emotional states that are contributing to our physical distress, or may interpret what we say and do inappropriately based on their own assumptions, and send us off thinking it’s all in our heads.

For suggestions on how to proactively address these obstacles and increase the chances of proper diagnosis and treatment, read “How to Get Your Doctor to Take Your Undiagnosed Condition Seriously.”

• Like any audition, you have a brief slot of time during your appointment (for which you may have waited weeks, months or years) to persuade a doctor that you are worth taking seriously. You may have been to many auditions before only to find yourself still seeking your big break.
• For the audition to go well, you must be well-prepared, with all the necessary paperwork such as lab test results from previous doctors, a detailed family history and a list current prescriptions.
• Communicating clearly, persuading with passion, staying on point and being honest are important for successfully selling your case.
• Signs, symptoms and positive test results should back up what you say.
• You must meet contest rules, such as having the right kind of condition for the type of medicine the doctor practices, and proof that if the doctor agrees to treat you ongoing, you can pay him or her.
• Challenging the doctor inappropriately is likely to turn him or her off, while righteous or appropriate challenges reveal your personal commitment. What constitutes inappropriate behavior is subjective and changes from moment to mood.
• Referrals from other doctors go a long way to getting instant credibility.
• Patients who take advice to heart and demonstrate a willingness to do what it takes are more likely to earn support.
• Being respectful, positive, nice, attractive, well-groomed, physically fit and compliant are all attributes the judges (whoops, doctors) are looking for in a candidate.

Always remember that you’re in a competition for time, resources and support and bring your best game. The results of the audition can mean your life changes forever, or you go back to your limited life before – only with life or death consequences.

An undiagnosed patient for more than 20 years, I have a complex case with overlapping symptoms.  Like many patients in my situation, I’ve seen over 100 doctors, and made some progress in managing some of my symptoms, but am still living with a painful, disabling condition.  I have starting to realize that perhaps the only way I’m going to find a diagnosis is to hire a personal medical coach to sit down with me and help explore my options -  or at least let me know what I’m working with.

My intention is to get better at any cost. And rather than continuing to pay doctors who either turf me, hand me a placebo diagnosis, call a zebra a horse, recommend I see a psychologist, tell me to go search the Internet or simply say I should give up – that I’ve run out of options, I would rather pay a health care professional a reasonable hourly rate out of pocket.

Here are some ways that I could see a health care professional making a living as a personal medical coach:

• Project management – Taking a project management approach is empowering for patients and efficient for problem solving. Services could include conducting an assessment of the current situation including documenting signs and symptoms, quality of life, review of records, summarizing previous tests & treatments; setting objectives, goals and tasks, identifying resources and setting timelines; writing recommendations / summary notes for other doctors; ordering tests, imaging and scrips as medically necessary.
• Access to information – As someone without a medical license, I am either not allowed access to some health information databases, or the cost is prohibitive for me to pay for a subscription when I will be the only one using it. Simply providing information from these databases on request from researching patients would be an easy way to attract clients.
• Research – For those who don’t speak the lingo, having a medical professional who is willing to research symptoms and potential diagnoses is a wide ray of light in the surrounding darkness.
• Supervision of care – Developing a plan of care by comparing current recommendations or orders from other doctors against best practices, current thought, recent breakthroughs, available technologies, etc. could give patients the strategic advantage they need for improved health.

  For example, it took me a long time to find out that the quality of an MRI varies greatly depending on the type of machinery a facility has. Or I had a doctor order an important test that I wouldn’t be able to physically handle. I finally found out that he had ordered an older kind of test, and the new one was much more tolerable. If I had had someone available who could have pointed these things out, I would have been saved a lot of money, time and heartache…

• Coordinating care between doctors — Recently I took a trip to L.A., along with my sister who is also chronically ill, to see some of the best doctors in the country at Cedars Sinai and UCLA. We got excellent guidance from these doctors, who recommended specific courses of action including certain tests. They wrote detailed reports and provided them to our primary care physicians and specialists in our home town.

  Unfortunately, our physician was unwilling to order the tests because she “wouldn’t be able to interpret the results”, and no testing facility would accept an order from an out-of-state doctor. All we need is someone locally to order the tests, but as yet we remain in limbo.

• Bedside advocacy – Your presence as  a facilitator and advocate, when a hospital or long term care patient is too weak, medicated or confused to assert themselves on their own behalf, could be invaluable to patients, their loved ones, and health care staff.

  Your presence as an unofficial third party, representing the interests of the patient as a coach by organizing and providing documentation including a plan of care, insurance, living will or do not resuscitate order, and communicating with the patient and loved ones about what is happening in terms of their care, could alleviate a great deal of stress, reduce the possibility of expensive mistakes or unnecessary tests, and contribute to the recovery of the patient.

• Integrative medicine – Combining knowledge of alternative, Eastern and traditional medicine to support patients that are open to all possibilities is a growing field, and inspiring many to get into wellness coaching. As a personal medical coach, you may find the freedom to explore these integrative approaches, or work with wellness coaches who are not licensed physicians.
• Providing health insurance – This may be a little out there, but it seems to me that if you were able to provide an affordable group health insurance plan to your clients, you’d have a lot more clients… I know that some hospitals and medical centers are starting to offer their own insurance – perhaps this would be an option for medical coaches as well.

I’m not sure how realistic it is to suggest that a doctor opt to work as a consultant rather than in a practice. I’m sure there is a system in place that works well enough to keep attracting doctors to play in the same disharmonious orchestra. But I can’t help but think that there must be some doctors who are considering retirement, graduating from medical school and considering their options, looking for a change or are themselves disabled, who would find a consultant’s life appealing.

Certainly the idea of a private doctor has been around for a long time… Perhaps it’s finally time to be able to make a living providing that level of service to the masses who desperately need it.

In one episode of Mystery Diagnosis, an ER nurse comes down with a mysterious malady that interferes with her ability to work and live daily life.  In the course of trying to find out what she had, she was met with indifference from the very doctors she worked with. At one point, she asks the camera “Where is the medical curiosity?” To me, this said a mouthful.

I also have had an unexplained malady for more than 20 years, and have seen at least 100 doctors. Call it compelled inquisitiveness, but I finally decided out of desperation to do my own research to figure out what was going on with me. I assigned myself to be the investigator my doctors didn’t either have the time, interest or competency to be for me. Surprisingly enough (*read sarcasm*), I was able to diagnose myself within a couple days of applying the following skills:

1. I started by looking for a health coach. There had to be a doctor out there who was tired of helping lots of patients a little, and wanted to help a few patients a lot. I searched all over the Web, but in 2005 the idea of a coach to help navigate health systems was nowhere to be found.

2. I turned to what I knew from my work as a project manager.  There are great books out there that teach skills for setting objectives and goals, defining tasks, identifying resources and setting timelines. By considering “getting better” to be a project with a specific beginning and ending, I was able to gain a great deal of objectivity. Doctors became resources rather than authority figures, and asking for what I needed became less daunting when I had specific tasks to accomplish.

3. I ordered copies of all my medical files from the beginning of time and poured over them, looking for abnormal test results or comments that stood out. In several cases I found references to conditions or symptoms that had been dismissed at the time, but had been diagnosed and treated much later — after years of suffering. I made a list of questions for which to find answers.

4. Using my health-insurance-covered mental health benefit, I “hired” a psychologist specifically to support me in my endeavor to get better. I reported each week on the progress I was making, vented about ignorant doctors, and shared victories when I found another piece to the puzzle.

5. I looked up test results on www.labtestsonline.org, a detailed website about lab tests including why they’re ordered, how they’re done, and how results are interpreted provided by the American Association for Clinical Chemistry.

6. On AuntMinnie.com, I discovered that the quality of imaging tests such as CAT scans and MRIs can vary dramatically between diagnostic imaging facilities, and decided to request repeat tests at facilities I chose after comparing them.

7. I went to www.medlineplus.gov, the free version of the health information database that many doctors rely on. It is a super-search-engine that brings up results from reliable information sources that provide patient-level guides to medical conditions.

8. I looked up articles on www.emedicine.com which is a continually-updated resource for doctors and patients, with over 10,000 physician contributors.

9. I paid for a one month physician-level subscription to www.uptodate.com, which has a team of health care professionals who summarize recent medical articles so patients and doctors can get up to speed about the latest standards in care for specific conditions.

10. I considered the possibility my condition may be genetic, and did some research on the National Society of Genetic Counselors website.

11. I joined the forum on the National Organization for Rare Disorders (NORD) website, where I posted questions and read stories of other patients in search of a diagnosis.

12. I found non-profit organizations and support groups that have resources for people who don’t yet have a diagnosis, including Hormones411, the Autoimmune Information Network and the Patient Advocate Foundation.  There a several good places to look for support groups, including the NORD website, selfhelpgroups.org, and Daily Strength.

13. Using paperwork from various doctors’ offices as a guide, I created a Word document that listed my medical history including diagnoses and dates, family history,  recent tests, medications and dosages, contact information for other doctors previous and present, and symptoms with comments about what alleviates or exacerbates them. I take this with me to doctor appointments, and as I fill out paperwork I write “see attached” so I don’t have to keep filling out the same information over and over. Or, I give it to the receptionist to have her include it in my file prior to the doctor coming in to see me.

The end result was I diagnosed myself in 2006 with a brain tumor that had given me the symptoms of Cushing’s Disease for many years. To my chagrin, it took wading through several more doctors before I found someone who took me seriously enough to request an MRI. (I was met with comments like “You can’t have that or you’d be dead by now.”)

Then, once I actually held a copy of the MRI report in my hand and jumped up and down with excitement that I had a brain tumor, I thought I was home free. Turns out doctors need a lot of convincing that a brain tumor needs to be treated. Eventually, through the Pituitary Network Association, I found a surgeon in California who, in a couple hours, changed my life dramatically for the better.

Of course, if life was that simple it wouldn’t be very interesting. So, as it turns out, I had another underlying condition that raised its ugly head once my tumor had been removed. Although I believe I have accumulated enough evidence to support a diagnosis, I have yet to find a doctor who will consider my hypothesis as credible. My latest strategic approach was to post an ad on Craig’s List for a Personal Medical Consultant. No solid leads yet, although I did get a referral to an integrative medicine doctor who charges $500 up front, before you even know if she’ll be able to help you.

As far as the ER nurse with the mystery malady, doctors diagnosed her with lymphoma and took out her spleen, subjecting her to bone marrow biopsies and spinal taps before they figured out she had Adult Onset Still’s Disease, a form of arthritis. Watch the Mystery Diagnosis “Frenetic Genetics” episode.

If there is one thing that shows like Mystery Diagnosis and House teach us, it’s that medical curiosity is essential to quality medical care.  There’s nothing like waiting six weeks for an appointment with a specialist, saving up money for the bill and prescriptions, preparing documentation, enduring symptoms, and placing your hope on 15 minutes in an exam room, only to be met by a health care professional who has no interest in the extraordinary, and no willingness to consider the possibilities. But, learning from this all-too-common scenario, using “degree of medical curiosity” as a notch on the measuring stick of desirable doctors  makes it easy to identify the health care professional who is truly going to make a difference for you.