502 SelfWork: The Medical and Mental Trauma of Chronic Invisible Illness with Amy Kurtz

In this SelfWork episode, Dr. Margaret interviews trauma expert on medical and mental trauma of chronic invisible illness – Amy Kurtz.

194 million Americans–more than 76 percent of the population–are living with chronic illness. Many eventually stabilize, but what happens when the body heals and you still don’t feel safe inside it?

Patient advocate and health coach Amy Kurtz knows this gap in our healthcare system firsthand. Having gone to 36 doctors, trying to find out what was the source of her symptoms, she was already exhausted from that decades-long effort. Finally hearing the diagnosis of late-stage neurological Lyme disease with co-infections, and getting the right treatment, her labs may have improved.

But as her body began to stabilize, the fear didn’t fade. She lived in constant anticipation that her health would collapse again at any moment. It was her husband who finally named what she couldn’t: the illness may have receded, but the trauma hadn’t. Her body was healing, but her nervous system was not.

 What emerged from that conversation is her book that came out this week – BUT YOU LOOK FINE (Balance, June 9), an earnest guide to get through the dark tunnel of what she calls Medical Trauma Brain: the lingering imprint of illness that doesn’t disappear just because the diagnosis improves.

 

The trauma of mental illness misdiagnoses…

 A couple of years ago, Dr. Margaret interviewed Sarah Fay on her years of searching for the right mental illness diagnosis. In this riveting conversation with the author of Pathological: The True Story of Six Misdiagnoses and activist Sarah Fay, she tells her story of being labeled with six different diagnoses during three decades  of treatment, all accompanied by prescribed medications with, at times, very difficult side effects, and numerous therapy techniques.

Until finally, one psychiatrist told her – after the typical 30 minute initial visit – “I don’t know what you have.” His humility and caution changed her life, and she began looking into exactly what this “DSM” was and how subjective mental health diagnoses can be.

Amy Kurtz describes a similar frustration with the medical profession. Although doctors often can and do save lives, there are certainly times when the situation is complex enough not to fit into the box that they’ve specialized in.

And some docs will use what’s termed “medical gaslighting,” telling the patient (especially if she’s a “she”) that their opinions or experiences don’t explain anything – and may not even be factual. Amy even states that one doctor that told her flatly, “I don’t know what’s wrong” gave her hope, because he admitted not knowing – not having the answer she was looking for.

Medical trauma brain…

Amy’s also coined the term “medical trauma brain.” What does she mean by that? I’ll quote her from this interview:

It actually occurred after she began feeling better with the right diagnosis and the right treatment.

“So I got the proper diagnosis with 36, and with his help, I got better and better and better. And it wasn’t easy, but I was like, wow, like my life is taking a turn in a different direction than I’ve been able to see it for so long.  But what happened was not something I expected, nor did I have language for, which was that I physically felt better and that made room for me feeling bad mentally. I felt like I went from sick in the body to sick in the head, and I didn’t know what was happening to me. I was having extreme hypervigilance, extreme fear that the onset of any symptom that reminded me of how bad it was could be, could take me back like that to exactly how sick I was. I was, um, obsessive if I felt that anything could get worse.”

“I just felt like I was so tense and I couldn’t, I couldn’t stop. And I didn’t know why I was feeling that way. And it was like I physically got better, but my mind didn’t get the memo.

So then I started to talk to physicians and say, ‘Hey, is this something that you’ve seen because I’m having debilitating anxiety?’ And the person who brought it up to me was my husband not a doctor. And have you seen this before? And when I would say it, they would say, “Now that you mention it, I’ve had patients who it’s like, they’re better, but they’re not acting as if they’re better.” And I said, ‘That’s exactly it. What’s the name?’ Nobody could tell me.

So then I started interviewing thousands of patients for what became this book, and everyone said, “This is exactly how I feel.'” And that’s when the term “medical trauma brain” was born.

If you know someone who’s dealing with medical trauma…

Please send this interview to them. It could literally save them from months if not years of confusion and self-blame.

 

By the way… 

Send me a message about what your own mom was like!! You can record by clicking below and ask your question or make a comment. You’ll have 90 seconds to do so and that time goes quickly. By recording, you’re giving SelfWork (and me) permission to use your voice on the podcast. I’ll look forward to hearing from you!