For sufferers of diseases like chronic fatigue syndrome (CFS) or fibromyalgia syndrome (FMS), an accurate diagnosis can’t come quickly enough to aid them in getting the treatments they need to improve their quality of life. And with the ever-changing landscape of insurance companies battling with doctors over what tests and procedures are covered vs. experimental and a system that appears to reward “cookbook medicine,” it’s up to patients to take the reins on their medical care and serve as their own advocates, especially when dealing with chronic illnesses with unusual or difficult to pin down symptoms.
According to Dr. Leana Wen and Dr. Joshua Kosowsky, taking control of one’s diagnosis involves taking a partnership approach with your doctor using “The Eight Pillars To Better Diagnosis” Below are there reccomendations:
1. Tell the whole story.
Studies have shown that more than 80 percent of medical diagnoses can be made based on reviewing a complete patient medical history alone. While many times, doctors take the approach of asking you about your chief medical complaint or answering a series of yes/no questions in a survey, you will help yourself (and your doctor) if you come prepared with your complete medical history printed out, rehearsed, and ready to share in a clear, fact-based, succinct way.
2. Assert yourself in the doctor’s thought process.
As you are recounting your medical history, take notice of whether or not your doctor is being an active listener, and solicit feedback to be sure that he or she is understanding what you’re trying to explain. If you aren’t starting out on the same page, it may be difficult to develop a partnership in determining your diagnosis.
3. Be an active participant in your physical exam.
If your doctor is conducting a physical exam, be sure that you understand what the doctor is looking for, and ask questions. If you feel that the doctor is missing or overlooking something, don’t be afraid to point it out. Do not be afraid or embarrassed to ask about the implications of any findings from the physical exam, and what next steps would be.
4. Make a differential diagnosis together.
Put simply, a “differential diagnosis” is a list of all the possible diagnoses that could explain your set of symptoms. Be sure that you and your doctor work together to come up with a thorough list, and have a conversation about the estimated likelihood of each possible disease. Try to understand what the differences are in the diagnoses in terms of specific or characteristic symptoms that would either increase or rule out each diagnosis. Keep asking what else could be happening to you.
5. Make yourself a partner in the decision-making process.
Ultimately, your doctor is the one who underwent four years of undergraduate school, four years of medical school, and a residency that lasted somewhere between three and eight years - and that education, combined with the experiences learned on the job, are going to make him or her the expert on the subject of how to handle your care. Still, you can work with your doctor on devising a strategy to eliminate or confirm some of the potential diagnoses. You can help keep track of symptoms, logging onsets or triggers, and pay particular attention to specific symptoms that may be less obvious than the ones for which you sought out medical attention. By partnering with your doctor, you can arrive at a working diagnosis far more efficiently.
6. Apply tests rationally.
As you go through the tests to eliminate or confirm various diagnoses, don’t be afraid to ask questions and research the benefit of each test yourself. If you are asked to undergo expensive or invasive tests, you should ask for clarification until you have an understanding of how a particular test will help narrow down your differential diagnosis, as well knowing the risks associated with each procedure. Find out if there are alternatives, and ask what the benefits of each are.
7. Use common sense.
You should never leave a doctor’s office with a diagnosis that doesn’t make sense to you. Instead of assuming that the doctor must be right, consider the diagnosis you’ve been given (or lack thereof), and familiarize yourself enough with that disorder to either feel comfortable with your diagnosis or to seek out a second opinion. If the picture doesn’t add up for you, go back to the drawing board. You know your body better than anyone else - and you need to paint a clear, complete picture for an expert to come to a conclusion about what’s ailing you.
8. Integrate diagnosis into the healing process.
Once you’ve reached the point where you have a diagnosis, it’s time to have a conversation with your doctor about your prognosis and the predicted course of your particular ailment. You need to have an understanding of your treatment options, and the risks and benefits of your possibilities. If there are alternative treatments or supplemental options, including lifestyle and diet changes that may add further benefit or increase the effectiveness of your treatment plan, learn what those are and how you can apply them in your life. Especially in the case of chronic illness, if your diagnosis turns out to be wrong, you should have an understanding of what warning signs you should be looking for, or how long you should be undergoing treatment before you can expect to see results, so that you know to move on to plan B if your treatment isn’t working.
Bonus: Know when to throw in the towel.
You know your body better than any physician. Sure, your physician has the medical training to identify, by name and function, all of your working parts, but only you have an understanding of what “normal” is and how your symptoms deviate from that baseline. If you find that your doctor doesn’t believe you, or that you are being brushed off, take charge of your care and find a doctor who specializes in treating illnesses with symptoms like yours. Finding a doctor who will take you seriously and take the time to help you find out not only what’s wrong with you but how to make yourself better will help you on the road to recovery or managing your quality of life.