Below, Amy Kurtz shares five key insights from her new book, But You Look Fine: Trapped in the Hell Between Sick and Well and How To Break Free.
Amy is a chronic illness expert and researcher. She has been featured in Oprah Daily, New York Magazine, Good Morning America, Fox, and The Boston Globe.
What’s the Big Idea?
Healing from chronic illness isn’t complete when symptoms disappear. To fully recover, people must also heal the trauma, grief, and nervous-system changes left behind by the illness experience.
Listen to the audio version of this Book Bite—read by Amy herself—in the Next Big Idea App, or buy the book.
1. Medical Trauma Brain is real.
For people dealing with chronic illness, there’s this idea that if you can just get to the other side, if you can just stop having symptoms, life will be great. Your suffering will be over. But for many, that’s not the story. Even after you feel better physically, lingering psychological and physiological effects keep you suspended in a murky, in-between state. It’s the illness after the illness; I call it Medical Trauma Brain.
Chronic or severe illness is awful enough as experiences go, but protracted illness can also change you. It can rewire your brain and jangle your nervous system, leaving you in a state where you feel perpetually unsafe. You might be fearful or anxious, worn down or burned out. Maybe you feel like you’re always on guard, waiting for the other shoe to drop. However you experience it, Medical Trauma Brain keeps you in a stuck place where it’s impossible to feel good, or healed, or like you’ve truly come out on the other side of something.
2. There’s a gap between sick and well.
We often think of health as a dichotomy: You’re either sick or well. The truth is, there’s a space between them where you’re not fully either. Medical Trauma Brain (MTB) keeps you stuck there, in a gray, neither-here-nor-there place I call the Shadowlands.
When you’re lost in the Shadowlands, you’ve fallen into the gap between sick and well. You feel like a ghost, unable to truly connect to the outside world. Or, to connect, you have to put on a mask, pretending everything’s fine. This experience leaves you feeling disconnected and isolated, like there’s something wrong with you. Something that’s hard to name.
Part of the problem is the unrecognized grief that comes with MTB. An estimated 194 million Americans are struggling with chronic illness of some kind—that’s more than 76 percent of adults! Many will develop MTB, and yet it’s something no one talks about.
“Medical Trauma Brain (MTB) keeps you stuck there, in a gray, neither-here-nor-there place.”
When you deal with long-term illness, you take on the identity of “patient,” and in that process you lose something of yourself. When you finally feel better, everyone tells you to get back on the horse, but then you discover that the horse is long gone. You’ve lost part of your life, and you can’t get it back. Maybe you’ve gotten off track in your career, maybe you’ve had to neglect your relationships, maybe you’ve lost the ability to have children…creating the sense that you’ve been left behind by life.
These losses create a lot of grief, but grief often goes unrecognized, and this leads to more suffering and isolation. And because we don’t have language for it, or the cultural space to support people in the Shadowlands, the grief remains unprocessed. You can’t just pave over your pain and move on, as we’re often told to do. Instead, we need to recognize it so we can deal with it and climb out of that gap.
3. What helps us medically sometimes hurts us mentally.
There’s a saying: That which doesn’t kill me only makes me stronger. But for people with chronic illness, that which helped you can also hurt you. Some medical interventions, like surgery, are inherently traumatic. Even if you’re not conscious of it, trauma can be stored in the body, disrupting your nervous system and causing other long-term issues. But sadly, there’s another aspect of care that can also cause a lasting imprint: our interactions with the medical system.
The identity loss that comes from life as a patient is made worse when patients are encouraged to give all their power to physicians—to bypass their own judgment and allow the so-called experts, alone, to decide on their course of treatment. That kind of doctor-patient relationship can be uncomfortable, disorienting, and even abusive.
In one survey, a shocking 72 percent of women said they have experienced some form of medical gaslighting, where a doctor implied or flat-out said that they were exaggerating or making up symptoms, or otherwise invalidated or ignored them. Even Harvard Medical School has tagged this as a thing. When you’re already struggling and someone you view as more powerful than you diminishes you, it can cause lasting trauma. It makes you doubt on a deep level, in a way that can be hard to recover from.
4. Resilience is your frenemy.
Our culture is totally pumped on resilience. We champion it, preach it, tell everyone it’s the way to a better life. People with chronic illness have to adopt a resilience posture to deal with the rollercoaster of sickness: the never-ending tests, the misdiagnoses, the unending search for a medication that works without making you lose your toenails, develop raging bowel distress, or making your skin itch like you’ve been bitten by a thousand fire ants. To get through all of that, along with medical gaslighting, you’ve got to be resilient.
Resilience is a good thing, and it’s necessary. But at some point, the same thing that helped you get through illness can prevent you from healing fully on the other side. It can morph into a kind of toxic resilience, where you adopt that push-through-everything posture throughout life.
“At some point, the same thing that helped you get through illness can prevent you from healing fully on the other side.”
Toxic resilience prevents us from processing emotions. It stops us from naming how we feel or seeking help. And that rock-hard resilience posture can keep us from healing MTB. If we want to climb out of that gap and return to the world of Technicolor, we need to drop toxic resilience. We need to be able to walk back through our pain and our tough experiences and say, “That sucked.” We need to be able to say, “I know I’m not sick anymore, but I’m not well either.” And the biggest thing of all, we need to be able to look in the mirror and say, “I love you. You did great.”
Part of healing MTB is taking back power and recognizing that you are in the driver’s seat of your life. That you are strong and capable, and that means you don’t have to be so damn resilient all the time. You don’t have to hide your feelings. You don’t have to wear a mask. You can adopt a new identity that is both powerful and vulnerable.
5. Your brain-body was rewired once, and it can be again.
You can heal MTB. You can come out on the other side! When you develop MTB, it’s because something in your brain-body (a term I use because the two aren’t separate where MTB and the nervous system are concerned) was rewired. Rewired like the wonky electrical wiring in a bad house, kind of a way. But that rewiring can also be rewired. Some of the tools required to do this are ones many people with chronic illness already possess—healthy resilience being one of them.
At the most basic level, rewiring the brain-body has a lot to do with restoring—or perhaps creating—a sense of safety. Because with chronic illness, you are bombarded with a powerful message: “You are not safe!” That message nestles deep inside you and stays there, fueling MTB. That deeply ingrained belief is the true source of the anxiety, hypervigilance, burnout, and many other symptoms common to MTB.
“Rewiring the brain-body has a lot to do with restoring—or perhaps creating—a sense of safety.”
Shifting this message takes time, and healing is not a linear path. What works for some isn’t as effective for others, but there is a large toolkit that can help you. Some of those tools come in the form of other people, such as trained professionals who understand trauma and can help you with brain-body-based healing methods, like somatic therapies, that enable true, root-level healing.
Diving this deep and doing this kind of dedicated work can lead to a global healing experience, where you rewire not just MTB, but all kinds of traumatic experiences you may have stored inside you. There is a light at the end of the tunnel. Real healing, and a better life than you ever imagined, are possible.
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