Talking to Your Doctor
Having a rare or poorly understood disease, such as one of the fat disorders listed on this site, is a challenge in its own right and patients often find it can be difficult to establish a positive working relationship with physicians regarding their condition.
This difficulty can result in misdiagnosis, extreme frustration, and/or poor or no management of symptoms. Patients may be told lipomas are not painful and/or are benign cosmetic problems that should be left alone. Insurance often denies removal unless there is documented pain or the lipoma is causing some kind of dysfunction. As a result, the much-needed validation patients seek is denied and they are left to question their own sanity.
The bottom line is that you will need to become your own health advocate. You can also take this one step further and enlist the help of a friend or family member as a co-advocate. On days when you might not be functioning at par, there will be someone else who can remember details and if necessary, step in and speak for you. You will need to learn as much as humanly possible about your particular disease. Knowledge is power! It will enable you to present your case clearly, knowledgeably, concisely AND be able to answer questions or give counter opinions.
It is very important that you remain CALM when presenting your ’case’ to a new doctor; if you appear to be in control of your emotions, you are more direct and a doctor is better able to understand your concerns. It is also helpful if you learn to use medical terms that your doctor might use when discussing conditions as this will foster credibility and show your doctor that you have a fairly good understanding of what is happening to your body. Printing out reliable medical information and/or published articles pertaining to your condition to take to your doctor can also be a vast help. Chances are the doctor is not very familiar with any of the fat disorders. Write out a complete list of symptoms, a list of all medications and supplements you are currently taking, your list of questions, a synopsis of past surgeries, family history and a diary of recent tests that have been done along with results if pertinent.
There are two other tactics that may work when making an appointment with a new medical provider. One tactic is to call for a ‘consultation’ with the new medical provider; make it clear you wish to discuss your disease with the doctor before any exam would take place. It is at this time that you would present published medical articles and your relevant history to the doctor. At this consultation time, you can present your disease to the doctor and let them know what you expect of them as your possible new medical provider. If you have already been diagnosed, perhaps you will need on-going blood work and pain management. It does help the doctor if he or she knows in advance what YOU expect of them- particularly when dealing with an orphan disease.
Another tactic that some patients have used to prevent disappointment and frustration is to contact the doctor’s office in advance asking if the doctor is familiar with your condition and/or is willing to treat you. This can be done by writing a letter in advance and waiting for a response or by calling and speaking to the office manager or directly to the physician. While this might be a daunting task, it could save a lot of time, expense and physical effort by having to go to yet another appointment only to be turned away.
While the tips suggested here are not guarantees of success, they will create a system that will allow you to continue your search armed with the proper tools and hopefully streamline the process. Our goal is to bring awareness to the medical community so no one has to search for help with a fat disorder. Meantime, we hope these suggestions will aid you in your quest.
Good luck and good hunting!