Advocating for Yourself with Your Doctor

I’ve seen a lot of doctors about my brain. I’m the kind of person who needs to understand everything; I don’t function well with uncertainty. Not understanding myself– it’s the ultimate distraction and the ultimate obsession. So I’ve been to more than my share of places looking for answers.

In an ideal situation, a doctor-patient relationship would be based on trust, but, in my experience, that’s rarely the case. I’ve had doctors and therapists that don’t trust me. They don’t trust that I know when my symptoms are psychogenic; they don’t trust that I know my own medical history. I’m guilty, too, though, because I don’t trust doctors. I’ve lied in appointments and withheld information because I didn’t trust them to make the right calls.

My trust isn’t going to be inherent; it has to be earned. However, earning trust takes time that neither my doctor nor I have. So what can be done? 

I do what I can to lessen the uncertainty for all parties. By going in prepared to advocate for myself with objective facts, I know I’m doing my part to get the best care possible.

Know Your Medical History

Doctors are used to patients being uninformed or dishonest about their own health, so when we enter their offices unprepared, it confirms their assumptions. Whenever possible, bring a written record of your medical history to your appointments. If you can get documentation from past treatment providers, too, that’s even better.

Neurodivergent people often have extensive medical histories, multiple prescriptions, and conflicting diagnoses. It can be a lot of information to keep track of in our heads, especially when we’re nervous about an appointment or fighting through brain fog. Having a written record means you won’t forget or misrepresent your information. 

If your written history is corroborated by medical records, it gives your doctor a reason to take you at your word. The opioid crisis has been hard for patients with chronic issues. Medical professionals are terrified of accusations of overprescribing, and this fear often prevents people with real medical concerns from getting the medication they need. While there are no guarantees, I’ve noticed a significant difference in prescribing practices when I can show doctors my history with Xanax (not an opioid, but linked to overdoses) versus when I share that history verbally.

Write Things Down

I’m bad at keeping track of my symptoms. My sense of wellbeing fluctuates wildly from day to day, and if I’m having a positive streak, I may completely forget the living nightmare I was experiencing just a few days ago. When a doctor asks if I’ve been experiencing any anxiety in the past two weeks, I have instinctively answered “no” based on the previous three or four days when just nine days before I was sobbing and clawing at my skin.

For neurodivergent people who struggle with real-time processing and communication, writing down our trials and triumphs before the appointment can give us time to sort through the information before we are questioned.  This strategy allows me to more effectively and accurately communicate my experiences to my doctors.

Be Honest

At my last appointment, my doctor asked questions like “Are you superstitious?” and “Have you ever had to return home to check something?” that were obviously designed to see if I had OCD. My answer to both was “no.”

I was lying. Turtles are good luck; snakes are bad omens. I had made my husband turn around the car so I could turn off the oven (which was already off) just three days before. The lie wasn’t quite intentional, but I knew the purpose of the questions and felt we were wasting time. I did not, based on my limited understanding at the time, believe I had OCD. I wanted to move on.

Since that appointment, I’ve learned more about the condition. I was unaware of the multiple types of OCD, some of which may actually fit me. My lies may have influenced my diagnosis. I’m returning for a follow-up appointment tomorrow and have made a note to correct my mistake.

It’s easy to get flustered and misspeak, but if we don’t correct those flubs they could hurt our already fragile credibility with medical professionals. Worse, they could negatively impact our care.

Ask Questions

Asking questions (when they’re answered thoroughly) can build your trust in your treatment provider, leading to better outcomes. For example, studies show that when patients understand why their medications are important, they are more likely to take them as prescribed.

Conversely, if they brush off or fail to answer your questions, it may be time to find a new doctor. When I asked my neurologist about severe depressive mood swings I had been experiencing on Klonopin, he responded that the medication shouldn’t cause that reaction. However, mood swings are a listed side effect of the drug. That was my last appointment with him.

We don’t always think of all of our questions in the office. If you have a question after the fact, don’t hesitate to ask your doctor about it later. In my last appointment, I received a large amount of information very quickly. I had three new diagnoses and had my diagnosis of over a decade thrown out the window. While the specialist explained a lot, I still have a lot of questions, many of which came up after our conversation. I’ll be bringing a list of those questions to my follow-up appointment tomorrow.

Check Your Records

I strongly recommend getting copies of your medical records on a regular basis, not just when you need them. Having the records in your possession can help you keep your history up to date and can save you time and effort if you need to switch doctors quickly or see a specialist.

More importantly, doctors may record details inaccurately. If you don’t have those documents, your current treatment provider will only have the information provided.

I discovered that my neurologist had been misrepresenting my satisfaction in his reports. Remember how I had asked him about my severe mood swings? Not only did this complaint not appear in my records but he also noted that I was very happy with my treatment!

As I went through the records more closely, I found he had also misrecorded which medications had caused negative side effects in my past. Had I not reviewed these records before giving them to my neuropsychiatrist, his view of my previous treatment and medical history would have been altered.

It can be tiring to deal with assumptions and distrust in the doctor’s office, especially when we’re likely there because we are experiencing other difficulties in our lives. Still, advocating for our care is a necessity. While it may be unfair for so much of the burden to be on the patient to build trust, the alternative– substandard care– is worse.

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