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7 Strategies for Communicating With Doctors When You Have Medical PTSD

One of the most terrifying things for me is communicating with doctors. Over the years, I’ve heard enough pushback, belittling, and general unhelpfulness that I now suffer from increased anxiety whenever I need to ask the doctor a question.

Today, I emailed two of my daughter’s doctors, and I’m still a mess.

I’ve been through a number of medical professionals over the last few years, for myself, my husband, and our daughter, and not every communication has been productive.

Sometimes, it’s a clear sign that the particular doctor isn’t a good fit for our needs. Sometimes it’s a sign that my medical PTSD is taking hold of how I communicate, and I need to take a step back.

For me, I find a lot of the anxiety comes out in the form of arguing and rapid speech. I’m getting better about having clear and professional communication, even now when diagnoses hang in the balance and are dependent largely on opinion.

I know that pushing aside the fear of talking to a doctor can be overwhelming, so here’s a few strategies I’ve found to be helpful.

1. Talk out your frustrations first.

By this, I mean talk to your spouse, parents, friends, therapist, etc. before you contact the doctor in question. Many times, communication is related to a test result, a need for more testing, or a treatment plan. The doctor’s recommendations don’t always fit perfectly with our vision for our medical care, and it’s normal to be frustrated by this. That frustration, however, can impede any real ability to problem solve. If you need to be angry, or upset, or just confused, talk it out with someone who can offer a different perspective or a good listening ear, but doesn’t have your medical future in their hands. Then, when you’re ready to talk to the doctor, you’re able to be more logical.

2. Write a draft.

If you’re not sure what to say, or have a lot to cover, writing it out first will often help keep your focus, and then you can also determine if something truly needs to be addressed or if it’s trivial. Clear communication is so important in order to get the answers we need.

3. Research ahead of time.

We have all seen the poster in the doctor’s office, “Don’t confuse your Google search for my medical degree,” but often patients with rare diseases truly do rely on Google for diagnosis and expanded treatment options. If I hadn’t been curious enough to Google “cortisol” a few years ago, I probably wouldn’t be alive now.

A confident doctor will understand your need to have some background information, and as long as you don’t claim to be the expert, they’re pretty open minded about discussing research.

I try to approach research based conversations as a question. “I was reading this, and wondered what your thoughts are,” tends to be welcomed more than a confrontational approach.

4. Take a breath before responding.

I’ve had to ask the doctor to hold on a second while I’m on the phone. They’re telling me something I disagree with wholeheartedly, based on both research and experience, and my Mama Bear instinct is to fight back. My daughter’s first endocrinologist was not excited by my questioning, and the more she denied there being a problem, the more hysterical I became. Now, two endocrinologists later, I’ve found myself taking even more time. The email I sent today was after two weeks of careful consideration. I needed to share my experience and concerns, but in a way that doesn’t make the doctor feel like I’m attacking her experience and training. Stepping back for a minute to collect thoughts is absolutely okay.

5. Gratitude goes a long way.

Remember that while you live in a body that experiences your illness every single day, they spent a lot of time and money to learn about this category of medical sciences. Even if they’ll never understand an illness the way a patient will, thanking them for their time, commitment, and willingness to explain things to you shows that you do acknowledge them as the expert professional. It also helps to build a more respectful relationship.

6. Recognize when communication isn’t working.

Despite best efforts to communicate clearly and respectfully, not every doctor-patient relationship will be successful. This doesn’t necessarily mean they’re a bad doctor or that you’re a bad patient (though self-reflection is always a good idea), just that this particular relationship isn’t going to be productive. When you reach this point, staying respectful and above board is going to be the most important thing. Most doctors will remain professional; they understand and often are just as glad to see us go as we are to leave. However, you never know what might be placed in your medical records, and that’s a whole new battle to get cleared up. Walking away without burning bridges is essential, and common decency.

7. Self-reflection is important.

When the communication channels aren’t successful, it’s rarely a one-way street. Take the time to consider your interactions with the doctor, and see what you can do to improve communication, clarity, and respect. I’ve had a few times where I realized that I was too emotional, and unprofessional, and the way I chose to respond only made the situation worse.

Finding a working relationship with doctors is difficult, but not impossible, and as long as we stay respectful, that’s really all we ask of the doctors as well.

I hope this helps you to continue being your own best advocates in every way.