How to be a journalist about your illness

It turns out these skills come in handy, and you can use them, too

Hello, dear friends. I’ve been interested in journalism since I was a little kid, reading the comics pages and Bob Levey’s column in The Washington Post at the breakfast table. I majored in journalism (and philosophy) in college and worked at Virginia’s largest daily newspaper for most of a decade, mostly as an editor. My last journalism job was at The Washington Post, at its (sadly now closed) free daily, Express. I love working in a newsroom, and perhaps I’ll go back one day.

Lately, as I was thinking about how to be your own advocate in this messy medical system, it occurred to me that those journalism skills have served me well. I don’t mean in writing this newsletter — though they are definitely helpful here! — but in navigating a realm that is not set up well for patients.

Journalism skills are handy when you are sick.

And you don’t need to go to journalism school.

Here’s how to be a journalist about your illness:

Take notes

Believe me when I say you won’t remember everything that happens to you.

You think you will. I think I will! And then, a week later, or a year later, or 10. years later, you’ll be trying to remember …

How long did I take that medication?

How many scans have I had now?

What was the name of the great (or awful) doctor?

If there’s nothing else you take from this post: Take notes. Write it down.

Write down your symptoms, medications, procedures, diganoses — basically, the details of your illness.

Ideally, write it down somewhere you can find it later! (Ah, that’s the true trick.)

A notebook can work. Use it only for medical notes and give it a specific place to live in your home, so you can find it again and again.

The Notes app on your phone can work.

A place like Google Drive or Dropbox or Notion can work.

It’s up to you, whatever works best for you.

For doctor’s appointments, taking notes can be invaluable.

You can also record the conversation.

That’s what I do when I’m interviewing someone for a story. I know they’ll talk too fast for me to be able to accurately scribble down full-sentence quotes or all the details. Later, I upload the audio file to HappyScribe and produce a rough transcript and then clean it up. (There are many other transcribing tools, including Otter.ai).

I don’t usually record my appointments with doctors, but you definitely could. Ask the doctor if you can tape your conversation to help you remember all the details, and then use a voice memo app on your phone. (A small digital voice recorder is another option.)

Even if you take notes on a scrap of paper during an appointment and later lose it, taking notes is still worth it. The simple act of writing it down will help you remember more and pay closer attention in the moment.

What do you write down?

• Whatever your doctor tells you! Their assessment, guidance, answers to your questions, estimated times, medications to start, possible side effects, treatments they might recommend try in the future.

• Any procedures and treatments you go through — what they are, why you are having them, date, place, doctor, etc.

• When you start a medication — what the medication is addressing and how, the dosage, any side effects you notice.

• Questions for the next doctor’s visit.

• Results from tests. Which leads me to …

Get the primary source — a printouts of test results

Journalists go to the primary source whenever possible. Yes, it’s good to listen to the police chief at the press conference, but you also want to read the police report and watch any body cam footage yourself. Yes, it’s good to hear what the mayor has to say about tax increases or property values or water pollution, but you also want to get the data yourself.

Many health systems now offer apps that contain your health record, which is handy and helpful.

But it can also be useful to have a printout of the test results and the doctor’s report of surgeries and other procedures. These are usually free if you ask a doctor for one as they are discussing results with you. Someone has written up a summary of your surgery, an analysis of your CT scan, a report of your X-ray.

It’s simple to ask:

Doctor: So your bloodwork looks fine …

You: Could I have a printout of it?

Doctor: Oh, sure. I can print you a copy here.

If you don’t ask, though, you likely won’t get one.

A printout allows you to carry the info with you easily from doctor to doctor, even if they are outside your health system, hundreds of miles away, or years later. It allows you to access the information even when there’s no internet access for your phone in a doctor’s office.

And a printout allows you to look down during a conversation with a doctor and take in the info yourself. Huh. My Vitamin D is marked low. And huh. It doesn’t look like iron is anywhere on this list.

That leads me to …

Ask questions.

You are going to have questions, especially if you are looking at the primary sources, which are often written in medical terminology or not clear.

Why does it say my Vitamin D is low?

Did we check my iron? It doesn’t look like it, and sometimes I’m anemic.

No one cares like you do about your body. And no one will have all the data and all the feelings and all the history of your body like you do.

Naturally, you’ll have questions that might not occur to other people, including your doctor.

Ask the questions.

You deserve to ask all of your questions.

Sometimes patients don’t ask what they are most frightened about, or what is haunting them. It can feel scary to give voice to a deep fear.

Sometimes patients don’t ask because they don’t want to bother their doctor, who might seem rushed, curt, or stressed. Or simply matter-of-fact and business-like.

Sometimes patients don’t ask because they aren’t sure their concern is worth asking.

It is always worth asking.

Your question is valid.

Pretend you are a reporter for your body. It’s your job to ask.

If the doctor is bothered by questions, perhaps they are not the right doctor for you long term.

The more questions you ask, the more comfortable it will become to ask next time.

And imagine how good it will feel to leave the doctor having asked all the questions (and have written down the answers!)

Learn to pronounce medical terms correctly

One of the cardinal rules of reporting is to spell names correctly. Never assume. Even when it seems obvious. Your name is Jane Smith? How do you spell that?

It could be Jayne Smyth, right? This attention to detail is important for accuracy and for trust with the reader. If you can’t get a name right, what else have you missed?

Broadcast journalists must pronounce terms correctly. Mis-saying names and terms affects their credibility.

Your illness is probably full of long and complex terms.

Learn the terms for your exact diagnosis. Where it’s located in the body. The name of the muscles or joints or bones or organs that it is affecting. Medications you’ve taken or have had bad reactions to. Names of surgeries you’ve had.

Learn key terms, and how to pronounce them, around your illness. It builds trust — both trust in yourself and your doctor’s trust in you.*

For me, such vocabulary has been new words like:

synovial sarcoma

submandibular salivary gland

cefdinir

Medical terms can be obaque and difficult. (They don’t have to be so! But they are, and that serves as another unnecessary and unhelpful barrier between doctors and patients.)

But you can certainly learn them.

Sometimes doctors go fast, listing off specifics of a diagnosis that flies over my head. If this happens to you, and you feel embarrassed and lost and like you should be able to follow, it’s not you. Doctors can and should slow down. They can help you understand.

I often ask doctors to say a term again and spell it.

I’ll write it down and look it up later.

Google “pronunciation of ____________” and listen to a term. Repeat it a few times. Write it out as a shorthand if you need to remind yourself before an appointment how to say it.

This is valuable for a couple of reasons:

• It helps you remember more about the specifics of your body, which is handy for sharing with medical professionals.

• It makes the terms around your illness more familiar and less scary.

• It gives you confidence and agency, that you can learn more and understand your illness more deeply.

• It helps you have greater credibility when you talk with your doctor.

I don’t like this last part, but I’ve experienced it. Doctors have trained for years and years. They are working in a very scientific and intellectual realm. They have an identity as a smart person. And many of them assume you know little about medicine. Of course, patients didn’t study medicine as a student for 8-10 years. But we might have lived with an illness for two or three times that amount of time.

When you use medical terms, and pronounce them correctly, you are entering the doctors’ language and their world. Doctors are more likely, I think, to trust you and your assessment of your symptoms. I believe they could be more likely to take you seriously.

(*Edit: I should caution: Not every doctor loves it when patients dive into the medical details. I wish this wasn’t so, but if you meet a doctor who gets bothered by you knowing more than they think you should know, they may not be the right doctor for you long term, and in the short time, you might have to dial back your knowledge to just get what you need immediately. I really hate that anyone would experience such unkindness and condescension. Please know that there definitely are doctors out there who will appreciate you learning about your illness and many of the terms. Thank you to Michelle of Armchair Rebel newsletter for first sharing this warning.)

Do your own research.

The Internet has come a long way since it’s earliest sketchy days. Sure, there are still a lot of untruths and unreliable sources, but there are a lot of great sources, too.

Search engines have become a lot better about ranking credible sources first. You can get a decent overview of an illness simply by Googling. If you Google “diabetes,” for example, the first hits are the World Health Organization, CDC, Mayo Clinic, etc. Looking at nonprofit organizations or associations devoted to a specific disease can also be helpful.

Here’s a look at top hits for diabetes:

• World Health Organization’s Fact Sheet About Diabetes

• Diabetes Overview from the Mayo Clinic

• American Diabetes Association Overview

• NIH: National Institute of Diabetes and and Digestive and Kidney Disease: What is Diabetes?

Such sites could still have outdated information or share a frame that not everyone agrees with, but in general, these overviews will sync your basic understanding up with your doctor’s. That’s a good place to start.

For more in-depth information, you can:

• Sign up up for updates from journals related to your illness (JAMA has a series of specialty journals, like JAMA Dermatology and JAMA Cardiology.)

• Search PubMed, a giant database from the National Library of Medicine, for studies related to your illness

• Subscribe to newsletters or podcast episodes related to your illness written by experts or patients.

Take a wide view and add context

My last tip from journalism is to look at your position from a wider lens and add context. Just as we need stories about a particular event — a storm, an accident — we also need deeper investigations that put that event in context, helping us understand how it fits in historically and what it means for the future.

Maybe you experience a setback with an illness you’ve had for a long time. That can be so discouraging. Looking at it with a wider lens, with context, you might also notice that it was easier to catch it this time than the other two times, because you are now more familiar with the signs. Maybe you learn that most patients have more severe cases; you’ve been fortunate. And you notice that you’ve spent time developing a trusting connecting with your doctor, so you could reach them quickly to tell them about the concerning changing, and they made room to see you. And in the grand scheme, you have recovered from this setback before, so you know what’s ahead.

A wider perspective can really help, both in leveling emotions and thoughts, as well seeing important risks, opportunities, and changes that happen over long stretches of time.

Whew. This was a long post. (Clearly, I don’t have an assigning editor watching over me and advising me to cut it in half. ;) Thanks for making it to the end. I hope you found something useful here today.

Have you used any of these journalism skills — or others — as a patient?

To our journeys,
Brianne