Dr. Lawrence Afrin
10 Ways To Present Your MCAS Case to Doctors to Get Them to Listen
Seeking a MCAS diagnosis can be particularly challenging, especially when many Doctors are still in the dark about what Mast Cell Activation Syndrome is. One of the questions we often get asked is, “How can we best present our MCAS case in the best way to get a doctor to listen and understand what mast cell activation syndrome is?” We have compiled our thoughts on this topic to help you prepare to make sure you make the most out of your doctor’s appointment when you are being evaluated for Mast Cell Activation Syndrome. It is important to keep in mind that not every doctor understands what MCAS is, so the more you can “connect the dots” for them, the better chance you have of making the most out of your appointment.
1. Practice makes perfect. Organize all your thoughts and questions that you want to discuss with the doctor. Write them down or type them on your computer and print it out so that you can read off of it. Then practice what you are going to say before the visit. This way you won't worry about forgetting anything and, hopefully, it will prevent you from getting flustered if the doctor tries to rush you.
2. Bring along a family member or close friend. It can be comforting to have an advocate in the room with you, especially since doctor's visits can be overwhelming. That person can help take notes and make sure your questions are answered. In addition, there is nothing like having someone else to discuss the visit with after the fact, especially since it is easy to forget bits and pieces of the appointment.
3. Be prepared. Compile a list of problems and diagnoses prior to the visit. A narrative summary -- as brief as possible -- of the course of health problems and events in your life is helpful. A list of medications and allergies is helpful. Copies of doctors' notes from key consultations and visits is helpful; copies of doctors' notes from "routine" visits which provide no new diagnostic insights or major therapeutic decisions probably aren't helpful. Copies of test reports/results are helpful -- doubly so if results of key tests (whether for mast cell disease, infectious disease, or otherwise) are highlighted and made *easy* for the doctor to see/find. Copies of any materials other than as noted above probably are unhelpful. Keep in mind the value of a doctor's time, and boy does it take time to go through records. Presenting a huge stack of records will probably make the doctor recoil (at least internally, if not also visibly). Offering outside records is helpful, but try to trim the stack to just the notes/reports you think are most helpful. We understand you'll have less ability than the doctor to judge what's "most helpful," but that's OK. Do your best, and a reasonable physician will appreciate that you're trying to make it as easy as possible for them to help you with your complex situation.
4. Tell your story. Start at the beginning and continue through the series of events that led to your current condition. If your doctor tries to interrupt you with a closed ended question, expecting a yes or no answer, try to elaborate and provide a more personalized answer. Describe what you were like before the symptoms started and be sure to focus on the quality of any pain or discomfort you are having.
5. Share Requested Materials Far in Advance. Provide the doctor's office with the necessary materials as far ahead of the scheduled initial visit as possible. The doctor's schedule is busy, and their time during the visit is limited. If records on a complex new patient are available to the doctor in advance of the initial visit, they likely will find time and a way to review those records in advance of the visit, making their time and your time during the visit considerably more productive.
6. Look for Compatibility Cues. Not all relationships are created equal and compatibility is extremely important in a doctor/ patient relationship as it is in any other type of relationship. It likely will be quickly apparent whether the doctor "gets it," or is at least willing to learn, or not, and there's nothing you can do to change the mindset of a doctor who fundamentally doesn't want to learn, so if you get a sense the doctor is not going to be willing to try to help, then just politely take your leave as quickly as possible -- no point in wasting more of your time or the doctor's time -- and move on. You deserve to be seen by a doctor who gets you and wants to help you. If you feel like you are being blown off or your symptoms are not being acknowledged, invest time in finding someone else who is more compatible with your philosophy about medicine. You deserve to be heard, find someone who is willing to listen.
7. Bring Your Research. If your doctor indicates interest, bring a copy of a review article regarding the disease you are seeing them for. You can even consider highlighting the aspects of the disease which seem to fit your situation, so it quickly becomes obvious to the doctor how well your symptoms align with the manners in which the disease is described in the peer-reviewed literature as typically behaving.
8. Don't be afraid to ask what the doctor is thinking. The doctor might not realize that you are interested in the thought process around what diagnoses and testing she/he is considering. Let the doctor know that you want to be involved in the decision-making process. The more you understand the process, the more you can understand and get behind the recommended treatment protocol.
9. Provide a Primer on MCAS. If you are seeking evaluation or treatment for mast cell activation disease (MCAD), and if the opportunity presents itself, you can also mention that preliminary research is suggesting that mast cell activation disease is *far* more prevalent than the rare disease of Mastocytosis in which every physician received (1 minute of) training, and in our experience, physicians who come to learn about MCAD/MCAS soon come to recognize that many of their other chronically mysteriously ill, undiagnosable/unimprovable, "psychosomatic" patients also likely have this and thus become diagnosable, treatable and improvable. Most physicians are motivated by a desire to help sick people get better, and if the physician can see that by investing the effort to help *you*, he/she will then become able to help many others, too, that may be a significant motivator for them to decide to make that initial investment of time and energy in your case.
10. Provide Referral Resources. If the opportunity arises, you are welcome to mention to the doctor that if they have questions about this complex area, specifically regarding Mast Cell Activation Syndrome (MCAS), they do not have to struggle with this alone. We have walked this path already and are always happy to share with other professionals what we've learned in our own journeys, so if the doctor would like to discuss your case with either of us -- either in advance of your visit or after your visit – they are welcome to contact us and we'll be happy to engage in those conversations. The more professionals who come to understand this prevalent, diagnosable, and treatable disease in which *none* of us have been trained, the better.
It can't hurt to emphasize, courteously and briefly, that in spite of the complexity and prior undiagnosability of your condition, if it does turn out to be what you expect it is, then it *is* diagnosable and it *is* treatable, and most patients eventually gain significant improvement with one treatment or another even in spite of having been mysteriously ill for years to perhaps decades. At heart, what drives most physicians is a desire to help sick people get better. They will be less interested in helping people for whom there's no clear diagnostic or therapeutic path forward, but if you tell them that there are diagnostic and therapeutic steps to be taken which just haven't been taken before by any other physician, they may be more willing to extend themselves and invest the time and effort it will take them to learn something new.
Finally, be sure to prioritize your concerns. If you have a lot that you want to discuss with the doctor, and you are out of time, be sure to let them know that you realize you might need to make another appointment to cover all bases.
MCAS: AN INTEGRATIVE APPROACH