Dealing with a scary diagnosis

An interview with Jen Singer, author of the Just Diagnosed guides

Jen Singer is a talented writer and lovely human being who has dealt with a lot of health issues. She took her experience and channeled into her new book series, the Just Diagnosed guides. I talked to her about the books and her advice for patients and the people who love them. The conversation is edited and condensed.

What should someone do when they receive a scary new diagnosis?

Don’t Google! And don’t feel compelled to find information immediately. It's best to consult a friend who's a medical professional to help you sort through the online information or turn to the websites of trusted associations like the American Heart Association or American Cancer Society. They provide reliable information geared toward patients. They won’t scare you.

How do you view websites from reputable medical institutions like the Cleveland Clinic or Mayo Clinic?

While these institutions offer valuable basics, it's important to remember that they might not fully grasp the patient's perspective. They may focus on clinical information, which can differ from the experiences of those undergoing treatments. For example, they may use words like “discomfort” when they mean “holy shit that hurts”. Their perspective is a little different than for those of us who have had someone try and find a vein that's been wrecked by chemo.

How can patients deal with doctors who are super smart but don't communicate well?

Sometimes, lack of communication might be acceptable for short-term procedures, but ongoing treatment requires good communication. If you have someone who doesn’t listen, fire them. The other issue with subspecialties is that we make the assumption that every doctor cares about us as a whole, and the often don’t. Cardiologists are trained to look at your heart so if there's some other issue going on, or the medication that prescribe causes an issue to another organ, they might not know about it.

What's your advice for dealing with insurance companies when seeking medical tests and treatments?

Don't assume that just because your doctor says that you need a PET scan, your insurance company's going to shell out $1,000 for it. Insurance companies may not always prioritize patients' best interests, and doctors often have no idea what the insurance company will or will not approve. Patients should document everything, ask for case numbers, and confirm test approvals in writing. Take copious notes. And before you go for a test that’s expensive, make sure it’s approved. Make two calls, one to the insurance company and one to the facility performing the test.

How do you handle out-of-town relatives who offer unsolicited medical advice?

People think that having some sort of control means you’re helping the patient, and you’re not. Instead of giving advice that no one asked you for, ask how the patient got where they are. In medicine, doctors talk about horses and zebras. If you hear hoof beats, you probably have a horse, not a zebra. If you have a horse disease, it’s one that’s common enough that it can be treated locally. If you have a zebra disease, that’s different. Teaching hospitals do research and get funding for the newest treatments and medications, then it trickles down to everywhere else.

What's next on your writing agenda?

I plan to write more books about medical conditions and treatments. They are all from a patient's perspective and small enough to read in a waiting room. I want to use the terminology that patients use. I give patients and people who love them scripts to use when making calls to providers, because If you can get to the point quickly, the better the staff will be towards you. Much of the good information is doctor driven, and that’s not always what patients need.

Any final thoughts for patients dealing with a difficult diagnosis?

It's crucial for patients to know they can feel all the emotions that come with their diagnosis. They shouldn't feel pressured to be overly positive or "strong" for others. You’re telling them to have a good attitude, and maybe they are absolutely terrified because they're about to have a pacemaker put in or sad because the hair just came out after their first chemo. Acknowledging and expressing their true feelings is a vital part of the healing process. Your attitude can’t cure cancer. People will say they mean well, and I think we can do better than meaning well.

My father always said that the worst thing you could say about somebody is that they meant well, because that means that they screwed up so badly that the only thing left to say is that they meant well.

Ha!

Jen Singer’s books are available on Amazon. (affiliate link)