How To Advocate For Yourself At Doctor Appointments

How to Advocate For Yourself At Doctor Appointments

If you are anything like me, you probably hate going to doctor appointments and may even feel like they are a waste of time. Between having to advocate for yourself, the gaslighting by doctors, and all your daily symptoms like brain fog, fatigue, and pain, doctor appointments with chronic illness(es) can feel impossible. I am here to tell you that you are not alone. I know how it feels to sit in the appointment room and only get 15 minutes with the doctor to explain your 274 different symptoms, how they are all connected, and how it is affecting your life. To try to explain that it is not just anxiety or stress and that your pain and other symptoms are real.

I don’t know about you but there have been far too many times I have sat in my car after an appointment and just cried. For me, not being heard by doctors was one of the most traumatic things that have happened. To sit there and have a doctor tell you that if you weren’t so lazy and got off your fat ass to go for a run, all your pain would magically disappear. It’s crazy how isolating chronic illness can be.

But I’m here to tell you that I hear you and I see you. You are not alone.

Being the one constantly having to advocate for yourself at every doctor appointment can be both exhausting and overwhelming. Not to mention it often feels as though you’re being confrontational even when you’re just trying to explain. Here, you can find my tips and tricks for being heard by doctors and having a successful doctor appointment.

Understanding the Barriers You’re Facing

When you are navigating the healthcare system with one (or more likely multiple) chronic illness(es), you have most likely been a victim of

• Medical gaslighting
• Gender bias and stigma
• Short appointment times
• Being labeled as “difficult” or “drug seeking”

Unfortunately, this is all too common and often results in delaying care, developing medical trauma, or failing to advocate for yourself. I will 100% admit to being a victim of this. After my first doctor appointment where I brought up my symptoms, my doctor informed me that “it’s probably just an upset tummy” and to “take some tums and [I] should feel better.” I have gone to Emergency Rooms with no feeling in my extremities just to be told that they “don’t give out drugs” when all I wanted/needed was an MRI.

If this is something you have experienced, I am sorry.

I have heard so many others with similar stories, struggling to fight the stigma around chronic illnesses. And these experiences, stigma, and labels are only the beginning of the barriers you may face. When going to a doctor appointment, you often have to factor in

• Drive time to the appointment
• Pain and symptom level that day
• The time of day the appointments is
• Managing your medication while out of the house
• And so much more

All these things can make advocating for yourself feel impossible.

Whether you feel hopeless, scared, dismissed, alone, or just plain pissed off, these feelings are normal and doesn’t minimize your advocating. Having experienced all of these and more, I am going to walk you through how to advocate for yourself without becoming a victim of the healthcare system.

Preparing Before Your Appointment

Preparing before your doctor appointment is one of the best ways to advocate for yourself. By preparing ahead of time, it gives you the opportunity to collect all your thoughts. This is important because I can’t count the number of times I walked into an appointment without a plan of what I wanted to talk about and it made the appointment a waste of time, both mine and the doctors.

Tracking Your Symptoms and Questions

Tracking your symptoms ahead of time can be really helpful for both you and your doctor. By tracking your symptoms, you know ahead of time what symptoms are your worst, possible triggers for each symptom, and it gives you a good roadmap for what to bring up and what can wait until another appointment.

I highly recommend the app Guava (available on IOS, Android, and online) when tracking your symptoms. I have downloaded so many different apps trying to find the one that worked with my symptoms, hospital, and records that I had almost given up. Once I found Guava, tracking became so much easier. Specifically, I love the home page, Biomarkers, and Records. Guava allows all your documents and records to be accessed in one place without giving up on the good tracking features. A few things that helped me best were

• The quick entry for your symptoms, mood, food, weight, etc.
• Easy metrics view to review heart rate, sleep, steps, etc.
• Medication reminders!
• Comparative symptom tracking

I highly recommend checking it out! I don’t receive any commission gifts, or discounts from them, I just greatly enjoy their app and hope that it can help others like me.

If you aren’t tech savvy or would rather keep a paper copy of all your notes, click here to access my Prenatal/Doctor Appointment Prep Checklist. This Checklist gives you plenty of space to include your symptoms and questions, but I recommend you have no more than 3 priorities per visit. This allows you and the doctor enough time to go over your concerns, discuss how it is affecting you, and run any tests in the office.

Bring Medical Records, Medication Lists, and Notes

To piggyback off of tracking your symptoms and questions, make sure you bring them to every appointment. It can be frustrating when your doctor doesn’t remember you or the specifics of your case. You’re here so often you’re nearly on a first name basis with the doctor, how can she not remember that you’ve had this tremor for the last six weeks!

Trust me, that exact thought has run through my head more times than I can count. But what you don’t see is that your doctor sees anywhere between 100 to 300 patients per week and it is unreasonable to expect her to remember everything. That is why bringing all your documents to each appointment can save you and your doctor time when trying to remember when your last blood draw was. If you are meeting a new doctor or going to the Emergency Room, this can be especially important because it can help doctors take you more seriously and have a better understanding of the situation.

Bring A Support Person

If you notice your doctor dismissing your symptoms or concerns, consider bringing a trusted family member, friend, or spouse. Research has shown that you are more likely to have a positive appointment when you bring your trusted support person. Your person can also help you remember any questions you had, symptoms you forgot to mention, and instructions from the doctor.

Whether they are there to support you quietly or play an active role in advocating for you, know that asking someone to support you through this is not something to be ashamed or embarrassed about. It is you taking a stand against a system that largely believes we are faking it for attention.

Communicating Clearly and Confidently

Now that you should have the first step done, it is time to figure out how to actually advocate for yourself and what you can say. When you walk into your appointment, do so with the confidence of a 3-year-old who does not want to take a bath. You’re going to storm in there, sit down on the exam table like it is a throne made just for you, and you are going to wow your doctor.

Lead With Your Top Concern

Since you have your list with your top three concerns, you should have a general idea of what you want to bring up first. This generally should be your top concern. Whether it’s a symptom that has progressed, how your quality of life is falling, or the need for documentation to present to your employer, make sure that you are leading with the biggest issue.

Use Direct, Calm Language

When discussing what is going on, don’t beat around the bush. By using clear, direct language, you are ensuring that your doctor fully understands what you are going through and trying to explain. If you find yourself struggling with what to say, try writing down some of the phrases below and take them to your next appointment as notecards.

• I am most concerned about…
• ________ is impacting my daily life by…
• My symptoms are not being alleviated by…
• I understand that _______ specialists are hard to see but my symptoms….

Ask For Clarification When Needed

Sometimes when a doctor is explaining a condition or treatment, they forget that we don’t know all the medical jargon. This can lead to confusion and misinformation if not immediately clarified. It is always okay to ask for clarification when you need it. I am a firm believer that there is no such thing as a stupid question. If you need help asking for clarification, try using one of the phrases below.

• Can you explain that another way?
• What does that mean for my condition?
• Can you give me an example?
• Is there a visual aid I could look at?

Request That All Symptoms Be Documented

Document, document, document. Always make sure that your doctor documents your symptoms, how long you have been experiencing them, and their severity. This can be important not only for other doctors to see but in the event you decide to apply for disability benefits, you will need to have medical proof from your doctors as to your condition, symptoms, and current treatment.

What To Do If You Feel Dismissed

Feeling dismissed by a doctor is a horrible feeling. It can make you feel defeated and like everything is in your head. The trick is to remember that you know your body best. If something doesn’t feel right, keep voicing your concerns, just make sure you don’t let your emotions take over.

Responding calmly and re-stating your concerns can help clarify if there was a misunderstanding or if your doctor was dismissing your concerns. If your doctor continues to dismiss your concerns, ask that they make note of it in your chart. This may sound confrontational but by requesting this, the doctor knows that you are taking this seriously. By ensuring there is documented proof of the doctor refusing to do any testing, they may be able to be held liable for damages later on.

You also have the right to ask for a second opinion. This can either be done with a different doctor at the same hospital or clinic, or you can go to a completely different organization for the second opinion. There is no shame, or disservice you would be doing to your doctor if you requested a second opinion. I know many doctors encourage second opinions because they believe two brains are better than one.

Not every doctor will be amazing and listen to all your concerns and symptoms, but don’t be discouraged by doctor dismissals because there are always other options.

Following Up After Your Appointment

After your appointment, you probably just want to go home, curl up on the couch, and binge watch whatever your current favorite show is (and if you’re like me, pass out within the first 20 minutes). Despite the urge to do this, now is the best time to follow up with your doctor if you have the ability to send portal messages or emails.

Most days I walk into a room and forget what I was doing there so it should be no surprise to you that even with all my tips and tricks, sometimes I still walk out of appointments forgetting to mention something. That is why sending portal messages is one of my favorite ways to follow up. If you get home from your appointment and don’t really know where to go next or what to do, shoot your doctor a message asking for a summary of your appointment or a review of next steps for you or ask for updates on your lab results.

But most importantly, be sure to rest and decompress afterwards.

Doctor appointments can be tiring even on your best days so make sure you take care of yourself after appointments. Drink plenty of fluids, have a low energy snack, and rest your body. Don’t feel shame in resting or feel like it has to be earned. Rest is not a reward for pushing yourself to your limits, rest is how you show up every day no matter what.

A Gentle Tool That Can Help: Your Free Checklist

As I mentioned earlier, I created this free printable checklist for both prenatal and regular doctor appointments. It is only two pages long and not meant to overwhelm you at all. It provides just enough space for you to fill out your questions, concerns, symptoms, and notes from the doctor but not so much that it feels impossible to complete. If you want to check it out, click here to download. And remember, if you rather track on your phone or computer, check out Guava.

You’re Not “Difficult.” You’re Deserving

At the end of the day, you know your body better than anyone. No doctor can tell you exactly what you are feeling, only you can. So, when it feels like a doctor is dismissing you or minimizing your symptoms, don’t be afraid to speak up for yourself and advocate for your health. If you are looking for community with likeminded (and bodied) people, sign up for my newsletter to stay in the loop and get all my tips and tricks for handling chronic illnesses.