8 Tips to Advocate for Yourself with Doctors

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Hey there, chronic illness fighters! Hope you’re having a relaxing week! I’m so excited to share this blog post today! The number one chronic illness question I’ve been asked by you all is how to advocate for yourself with doctors, so today I’m sharing all my best tips with you. I’ve been on this journey for 8 years now, and these suggestions have been key for me. I hope it helps you as well!

Disclaimer

Before we get started, I wanted to offer one piece of advice! It’s important that you offer respect and courtesy when advocating for yourself. Remember your doctor is on your team and wants the best for you. You want to communicate effectively and set any necessary boundaries, of course, but don’t forget respect in the process. Let’s get to it!

Ask for a Copy of All Records

Keep a binder with all your records in chronological order. If there’s ever a discrepancy of when a medication change was made or when a symptom started, you’ll have a paper trail you can reference. This is also a helpful way you can collaborate with doctors. Oftentimes doctors have requested medical records from your other specialists, but never actually receive them. This makes appointments inefficient if they don’t have access to the information they need. If you have a copy of the records yourself, your doctor will greatly appreciate it and your appointment can continue as planned.

Bring a Supporter

Bringing a supporter is one of the most important ways you can advocate for yourself with doctors. Your supporter is hopefully someone who interacts with you daily. This is someone who witnesses symptom changes in you that you may not notice yourself. This is also someone who will stick up for you if the conversation with the doctor isn’t going as expected. Lastly, it is important your supporter is an active listener. Oftentimes those of us with chronic illnesses can experience brain fog and forget details that were mentioned during an appointment. This person will help listen and fill in any potential memory gaps. I typically bring my husband or my mom to all of my appointments. Even if you anticipate the appointment might be insignificant, you should still bring someone with you just in case anything unexpected comes up!

A couple sitting on an examination table holding hands, speaking with a female doctor who is holding a clipboard.

Do Your Research Before the Appointment

No one is more motivated to understand your body and the unique symptoms and complications it experiences than you. Become an expert in your illness. Use Google Scholar to search for questions you have about tests. Learn about the blood tests your doctor is ordering and what normal and abnormal results could mean. If you can understand your doctor’s thought process and the path he or she is taking in treating you, you can be a team player with them. You’ll be able to the right questions and get on board with why your doctor is thinking the way they are and ordering the tests they are. This made such a huge difference in how my appointments with doctors went, as I began to take on a more active role in the appointment. When doctors can see the immense effort you have taken to understanding the complexities of your disease, they will be more likely to listen to your thoughts and collaborate with you as a team.

Request Meetings be Documented in Visit Summaries

It can feel impossible to advocate for yourself with doctors when you feel as though they don’t take your requests seriously. If you request a test or treatment and your doctor denies it, request they notate this on their doctor summary. It’s important that you remain respectful when doing this, so as not to offend, but it is 100% within your rights to have your conversation officially recorded in your records. Oftentimes when you request this, doctors will backpedal and reconsider ordering the test or treatment, so this can be a very helpful tool to get your doctor to take you seriously!

Create an Appointment Agenda

Before any appointments, create a list of items you want to discuss and questions you want to remember to ask. This will keep you on track during the appointment and ensure that you leave feeling empowered and understood. I like to keep a note on my phone with questions and items I want to discuss at my next appointment; this way, I don’t have to try to remember to bring it with me, as I always have my phone! I can also share this note with my supporters and invite them to collaborate with me on the note, so we all have an understanding of what we want discussed during the appointment.

Note on phone with a list of questions to be asked at a doctor's appointment

Take Photos and Journal Your Symptoms

It can be hard to make diagnoses and treat conditions when doctors aren’t able to see the severity of your symptoms. The reality is life happens, and oftentimes you will be at your worst flare in between appointments, then magically feel better when an appointment comes around. Take ownership over your symptoms. Create a photo album on your phone titled “symptoms”. Every time you notice swelling, rashes, etc. snap a picture to show at your appointment. If you experience a symptom that cannot be captured in a photo like pain, dizziness or fatigue, jot down the date, the time, the symptom, and any potential changes that could have contributed to the flare. This is one of the easiest ways you can advocate for yourself with doctors, as it only takes a few moments to snap a picture or notate a symptom.

Set Respectful Boundaries with Your Doctor

We’ve all been there – the doctor orders all the tests and they come back normal. You’re feeling lost and confused because your symptoms are anything but normal. Unfortunately, these circumstances can cause doctors to say uncalled for statements such as “maybe it’s in your head” “have you tried meditation or counseling?” Even if they don’t state it out loud, it’s easy for them to send implied messaging, resulting in the conclusion, “you’re crazy”. While you should always take care of your mental health on your chronic illness journey, implying that your symptoms are only in your head is absolutely uncalled for and unacceptable. Don’t be afraid to set a respectful boundary such as, “doc I value your opinion. Please know that I am actively taking care of my mental health in xyz ways. I have a strong understanding of my body and its symptoms, and this topic of discussion has nothing to do with my mental health. I would appreciate you refraining from these kinds of comments in the future as they are unhelpful in finding a solution.” Sometimes the best way you can advocate for yourself with doctors is to help them realize what they are and are not welcome to discuss during appointments.

Consider Finding a New Doctor

If you’ve exhausted all your options to attempt a resolution with your doctor, and it becomes clear that you are not on the same page, it might be time to consider finding a new specialist. You are always within your rights to find a doctor who suits your needs. Don’t be afraid to get a second opinion! Your appointments are for you, not your doctor or their ego. I’ve found some of my favorite specialists through process of elimination with some not-so-great specialists. If I hadn’t left my previous specialists, I would have never found the caring, supportive, and respectful ones I have now! My best tip to find a wonderful doctor that takes your insurance is to check out Zocdoc! It’s an awesome resource to find doctors in your area, who take your insurance, and have wonderful reviews from real patients like you!

Screenshot of zocdoc search screen

Conclusion

I hope these suggestions help you advocate for yourself with doctors! Nothing is more important than your treatment and your care. I hope you never forget that you have the final say when it comes to your testing and treatment, and you can use these tips to advocate for yourself. If this post was helpful for you, be sure to check out my other blog post – 6 Tips for Easier Blood Draws and IVs when You’re a Hard Stick Patient! What challenges have you found in collaborating with your doctors? Let’s chat about it in the comments below!

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14 thoughts on “8 Tips to Advocate for Yourself with Doctors”

  1. Such valuable information! As a person with migraine my journey has required me to advocate for myself and these are fantastic tips. I have been blessed for the most part with excellent doctors, but even with the best of doctors taking an active role has huge benefits! Thank you!

    1. I agree completely. I have fantastic doctors, but even so, their respect for me grew immensely when I started taking an active role in understanding the testing, results, and treatment options that were relevant to my care. I wish you the best of luck with your migraines!

    1. I agree, it can be difficult to find the confidence to advocate for yourself! I’ve learned so much about it over the years, and I’m grateful for the growth I’ve had!

  2. This is so important because doctors do treat people differently. Brining a supporter and having helpful evidence and pictures is really great! Thanks for sharing and writing such an important topic!

    1. Thanks for sharing your thoughts! When I began bringing a supporter and proof of my symptoms, the conversations changed during my appointments. I hope this helps you too!

    1. I agree, it’s sad that we need to advocate for ourselves, but sometimes it’s necessary and it’s helpful to know how! Thanks for your feedback!

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