Have you spent years living with chronic illness, only to discover that medical symptoms aren’t all you’re battling? I get it. For more than a decade I wrestled with a complicated assortment of symptoms, trying desperately to get an accurate diagnosis and some real help. When that help finally came, thirty-six doctors later (yes, really), and my physical symptoms started to resolve, I was relieved, elated, and crying all the happy tears. Yet at the same time, something still didn’t feel right.
I was halfway through my treatments for what turned out to be late-stage neurological Lyme disease when it became evident to me that things were finally changing for the better. That my health was turning a corner, and I’d no longer have to spend most of my daily life managing my chronic illness—spending virtually all of my precious energy focused on doctors’ appointments, symptom management, and getting some real answers up in here already. But something inside me still felt off.
Why You Feel Trapped Between Sick and Well After Chronic Illness Treatment
I’m no stranger to the roller coaster of chronic illness. For most of my life since I was fourteen years old I’d been dealing with mysterious symptoms of one kind or another. There was the sudden, years-long bout with back pain that had no discernible cause. There was the toxic mold exposure. And then, the Lyme.
I knew the experience of feeling better without feeling entirely “well,” but this was different. Something wasn’t right. My body was improving, but I was so tense all the time. So anxious I worried that any little thing might set off a cascade of symptoms and send me cannonballing back into poor health. I was plagued with an overwhelming sense of fear and dread.
Then one night, my husband dropped a truth bomb that changed my life forever. He told me he’d been waiting for the other shoe to drop. That because I’d been through so much trauma with my illness, he’d always expected that there would be some kind of part two.
And there it was, the T word: trauma.
In all the years I’d spent as a professional patient, I was so wrapped up in trying not to die that I never realized how traumatic it had all been. The tests, the experimental treatments, the not knowing what was wrong, and perhaps the worst: all the gaslighting and dismissing I’d experienced from so many doctors and other medical professionals. I’d been invalidated, talked down to, and told it was all in my head. But I’d had to suck it up and soldier on because I desperately needed help.
Now, on the other side of things, I was facing something new: an illness after the illness. I had Medical Trauma Brain—the name I gave this phenomenon—and I’m not the only one.
Approximately 194 million American adults—that’s six in ten young adults, eight in ten midlife adults, and nine in ten older adults—report having at least one chronic illness. Pause and let that sink in for a minute because those statistics are bonkers. In this country, chronic disease care accounts for roughly 90 percent of the nation’s more than $4 trillion in annual health spending.
When I talked to people like me who’d been dealing with long-term illness and I described my theory of Medical Trauma Brain (or MTB), over and over again they validated it, saying they were going through the exact same thing. But I didn’t stop there. I started telling medical professionals about it too, and asked how it landed with them. The same thing happened. It was like they were all having a big V-8 moment where suddenly this big realization dawned on them:
Life with chronic illness is traumatic, and there are lingering effects from that trauma.
It’s an invisible illness—one that has, until now, gone completely under the radar. People with MTB have suffered in silence, and when they’ve tried to get help or even just a name for what they’re going through, they’ve been dismissed and invalidated all over again.
But all of that stops now. I see you, and I can tell you this for certain: What you’re experiencing is real.
To be clear, I’m not a doctor or a therapist, and the information I’m providing here is based on my own lived experience and research, along with interviews with other people with chronic illness, as well as medical doctors and licensed therapists. The insights I’m offering aren’t intended to constitute actual medical advice, but to help you understand your own experiences, and learn how you can get help.
What Is Medical Trauma Brain (MTB)?
Medical Trauma Brain is the term I came up with to describe the lingering traumatic stress that comes from life with a chronic illness.
In our world, we look at “sick” and “well” as a dichotomy. You’re one or the other. Yet there’s a space in between, a fresh hell between sick and well. When you’ve got MTB, it’s like you’ve fallen into that gap.
How Do I Know If I Have Medical Trauma Brain (MTB)?
Like chronic illness, Medical Trauma Brain (MTB) isn’t straight forward. It’s a collection of symptoms and experiences that each of us can experience a little differently, and you may find that you identify with some elements, but not others.
Key Signs and Symptoms of Medical Trauma Brain
People with MTB tend to have some common signs of medical trauma, such as:
- A vague, ongoing sense of dis-ease even after your disease starts to heal
- Ongoing, sometimes overwhelming anxiety that your symptoms will return
- Outsized responses to experiences in your life, like exploding with anger, erupting into panic, or going into shutdown mode
- Feeling like you’re somehow out of place in your own life. Maybe you feel disoriented or disconnected, or you feel sad or fearful that life has passed you by
- Grief over having lost large pieces of your life to the black hole of chronic illness and medical care
What Causes Medical Trauma Brain (MTB)?
Medical Trauma Brain is a fundamental re-wiring of the nervous system as a result of ongoing survival stress. It’s residual trauma from protracted illness.
Medical Trauma Brain (MTB) is related to a form of PTSD called C-PTSD, or complex post-traumatic stress disorder. It’s similar to regular PTSD but is, as the name implies, a bit more complicated.
You see, there’s stress, which is basically an everyday life thing, and can actually be good for you if you have the tools to meet it effectively. And then there’s survival stress, which goes beyond just run-of-the-mill doctor’s office anxiety. It’s where you feel your life is actually in danger.
When you experience chronic illness, you are exposed to survival stress on the regular. Unlike with classic post-traumatic stress disorder, which results from a single exposure to a traumatic event (like a car crash), with chronic illness, the survival stress is ongoing. Even worse, the source of the stress is your own body. You are the scene of the trauma.
What are the key phases of Medical Trauma Brain?
I’ve isolated six phases of chronic illness and emotional trauma that can contribute to Medical Trauma Brain (MTB). Maybe you’ll see yourself and your own experiences in some or all of them:
Phase 1: WTF?
The abject confusion of having all of these symptoms and not knowing what’s wrong.
Phase 2: The Diagnosis
The diagnosis you finally receive may or may not be definitive. It can also spark all kinds of painful questions, make you feel like you’re locked in a cage, or lead to even more confusion when it comes to treatments.
Phase 3: Identity Shift
You transition into the role of “sick person” or “full-time patient.” Part of your life—perhaps most of it—is taken over by your illness and the quest for healing.
Phase 4: Treatment Hell
Often, you feel worse before we feel better…if you feel better at all. Sometimes the path to healing isn’t clear, and you’re left trying one thing after another, dealing with side effects, more testing, and agonizing waiting periods.
Phase 5: Isolation
Through all of this, it’s like no one else can fully understand what you’re going through, and that is truly lonely-making. You might feel misunderstood, unseen, or neglected by loved ones or society. And the people responsible for your care can seem totally unaware of what you’re going through mentally and emotionally. That what helps us can also hurt us, and that medical treatment, in and of itself, can be traumatic.
Phase 6: The Hamster Wheel
You’re running in circles, desperate to find the right doctor, diagnosis, and treatment to feel better. Eventually, it can become more about the fear of getting sick again.
All of this can result in cumulative medical trauma. Rest assured, though: healing is possible!
Stuck in Survival Mode
The ongoing nature of chronic illness means that for long periods of time, we’re stuck in survival mode. That’s another way to think of Medical Trauma Brain (MTB).
To be clear, survival stress is something we can experience many contexts, like stepping off a curb to cross the street and almost getting hit by a car. Your heart is racing and you’re feeling panic and a surge of adrenaline because you’re literally afraid for your life. But once that threat passes, if your nervous system is regulated, you can go back to normal.
With chronic illness, ongoing, repeated exposure to survival stress can dysregulate your nervous system. When you’re dysregulated, exposure to even normal, everyday stressors, can send your system haywire. You might go into a full-blown panic or, on the other end of the spectrum, into shut-down mode.
But it’s not just survival stress that can contribute to the crazy-making feelings that come with Medical Trauma Brain (MTB).
Dissed and Dismissed: Medical Gaslighting
In 2024, an article came out in the American Journal of Medicine titled “Medical Gaslighting: A New Colloquialism.” According to the authors, the term to describes “an act that invalidates a patient’s genuine clinical concern without proper medical evaluation, because of physician ignorance, implicit bias, or medical paternalism.”
Sadly, medical gaslighting is astoundingly common, especially among women. A shocking 72 percent of women said they’ve experienced medical gaslighting, with 71 percent being told they were making up symptoms.
I’ve experienced it—like when I had a doctor offer me a prescription for Xanax instead of real help—and unfortunately I bet you have, too. A physician might tell you you’re over-reacting, or that it’s all in your head. I’ve actually had doctors (plural) tell me that I couldn’t be experiencing what I was telling them simply because it didn’t make sense to them.
When a medical professional dismisses you, it can make you lose faith in medical providers and the medical system as a whole. And at the very worst, it can make you question yourself. In our culture, we’re taught that “doctor knows best.” Being told you’re wrong about something so fundamental as your own experience can make you begin to undermine your own self-knowledge. At a fundamental level, you can become disconnected from yourself, and that’s tragic. And it compounds the feelings of loneliness and isolation you may already be feeling.
If you think you might have Medical Trauma Brain
There’s Nothing “Wrong” With You. While you may have Medical Trauma Brain (MTB), I can assure you that there is nothing “wrong” with you. You are not broken. Your nervous system is stuck in a place that’s not serving you well, but that can be changed.
Healing is possible, and help is available!
Healing trauma is a big deal, and I suggest that if you can, you enlist the help of a professional. Even if you’re not comfortable with or able to see a therapist, there are tons of books and other resources out there specifically about healing trauma. I refer to many of them in my book, But You Look FineBut You Look Fine, and I also provide some detailed advice on things you can do to help yourself.
One of the most important and meaningful kinds of support you can experience is the help you give yourself. It’s the love and compassion you show yourself, and that can start right now!
So take a big, deep breath. Do a long, slow exhale. And know that what you’re feeling is real, and you won’t always have to feel this way.
For a more detailed explanation of Medical Trauma Brain (MTB), and a roadmap and guidance on next steps check out my book, But You Look Fine.