Preparing for Medical Appointments

It’s that time again. That circled date on the calendar is coming up, meaning another appointment is on its way.

Medical appointments can be incredibly stressful. From getting to the appointment, the tests, the bloodwork, the questions, the entire process can be overwhelming and draining. Luckily, there are a lot of tools and resources available to help you prepare for any medical appointments you may have.

Find Your Team

To minimize stress, start by building a healthcare team. But not just any team, the right team. This is a big step that can make a big difference. 

At our 2022 Rare Neuroimmune Disorders Symposium, during her presentation on Building a Healthcare Team, Dr. Grace Gombolay, Assistant Professor at Emory University School of Medicine and Pediatric Neurologist at Children’s Healthcare of Atlanta, provided valuable insights and strategies for navigating the healthcare system.

“It’s hard to navigate the system. It’s hard to find somebody who specializes in and knows other patients with neuroimmune disorders. But thinking about all the other parts of your body and your health is also really important.” 

Dr. Gombolay goes on to share the role of neurologists but also dives deeper into the various professionals available. “We have what’s called rehabilitation doctors, or physical medicine and rehab. They’re also a very, very key player in this, because as you know, the brain affects the entire body, because it connects to everything in the body. And so, because of that, the rehab doctors help you with your functioning, especially not only motor, but just like your day-to-day skills, what we call activities of daily living. They can help you with that. And they can also help with thinking about strategies, especially with cognitive issues too. There are multiple roles that the rehabilitation doctors will play.” 

Learn more and listen to Dr. Gombolay’s entire presentation on our website to hear the rest of her tips for building the right healthcare team. You can also check out our Medical Professional Network and sort by location, disease expertise, and type of medical professionals including nurse practitioners, occupational therapists, physical therapists, and more. If you don’t have an expert or specialist in your area, ask your primary care physician if they’d be willing to do a physician-to-physician consultation with an expert. Email us at [email protected] for more information on how to set this up. 

Bring Someone With You

It can be hard to remember everything you would like to share with your doctor or recall their advice once you return home. One simple tip to help alleviate the overwhelm of medical appointments is to bring along a friend, family member, or caregiver. 

“One of the other things I find extremely helpful for me when I visit my physician is to either bring a family member with me or to make sure that I bring paper and a pen to write down a note because I often find that I’m so deep in conversation and focused on the discussion that you know five-ten minutes later an hour later I don’t remember everything that we discussed.” shares Kristen Smith in our Ask the Expert podcast episode, How to get the most out of your appointments: Physician and patient perspectives with Dr. Greenberg and Kristin Smith

Dr. Greenberg adds, “It’s amazing how many times multiple people will hear the same conversation and come away with slightly different versions of the same conversation and that is usually a sign of on the presentation side maybe people weren’t being as clear and so having another set of ears in the room is incredibly helpful for the aftermath from the visit and really understanding.”

Request Medical Records

Asking for copies of your tests, procedures, physicals, etc. is a great way to stay organized and will help you during future visits with your doctor. Consider keeping this documentation in a folder or binder and take them with you to all your appointments. If you end up changing providers, this will help get them up to speed on where you’re at with treatments and recovery. 

Self-Advocacy, Self-Advocacy, Self-Advocacy

Another stressor can stem from feeling like you can’t be assertive with your primary doctor or medical professional. In situations like this, it’s important to remember that self-advocacy is a skill that needs to be learned and practiced.

In a 2019 webinar on Self Advocacy and Care Coordination from the National Organization for Rare Disorders (NORD), Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF) states, “If you’re uncomfortable with your doctor-patient relationship with your care, you can get a second third, fourth, or even twentieth opinion. It may be time to consider working with another doctor or team if your doctor doesn’t seem to be really listening to you or doesn’t seem to have the time or even is offended when you ask too many questions.” 

Laran goes on to suggest asking questions, preparing a list ahead of time, and asking for extra time to help you feel empowered during your visit. She shares, “If it’s difficult to ask questions, or remember parts of conversations at appointments, you can communicate in alternate ways. Schedule a face-to-face meeting, send an email, write a letter, schedule a phone conference with your doctor. Or ask your doctor what’s the best way to communicate with them so that everyone can have an opportunity to fully ask and answer questions.”

Additional Support

If you are still experiencing anxiety leading up to your appointments, consider seeking help from a professional (ie counseling) or talk to other patients who can share what helps them. You can also join any of our support groups or consider talking one-on-one with someone who understands through our Peer Connect Program. We also suggest checking out the book Good Decisions Are The Best Medicine by Global Genes. Presented in an accessible format of short chapters, lists of questions and suggestions, and multiple worksheets, this book will help you become more empowered to approach your healthcare decisions with knowledge and confidence and be an active driver in you or your loved one’s healthcare decisions.

We hope the resources we’ve shared will help you. Remember, you are not alone. There are ways to help reduce stress as you go to medical appointments. For any questions, you can reach out to us directly at [email protected].