Most Medical Trauma Happens Outside Hospitals
When we think of medical trauma, our minds often picture scenes from television dramas: the frantic rush to the emergency department, the sterile, bright lights of an operating room, or the dramatic moments of life-and-death decisions. But for millions of people living with chronic illness and navigating the healthcare system, medical trauma looks nothing like what we see on screen. It's quieter, more insidious, and woven into everyday life in ways that can be hard for others to understand.
The Moment Everything Changes
Medical trauma frequently starts not with a sudden emergency, but with a routine conversation in a doctor's office. It's the profound 180-degree change your life undergoes after a new diagnosis, requiring you to reevaluate core aspects of your daily living. One moment, you're making future plans based on specific health assumptions, and the next, you're acquiring a whole new vocabulary of symptoms, treatments, and restrictions. I couldn’t even pronounce my new diagnoses (dermatomyositis and antisynthetase syndrome) correctly for the first couple of months.
This type of trauma doesn't make loud alarms or flashing lights. Instead, it creeps in gradually, like dust accumulating in hidden corners of your mind and body. It often goes unnoticed at first, quietly settling into the background of your daily life. Over time, it begins to influence your thoughts, feelings, and maybe even your physical sensations without you realizing it. It dawns on you that your body, once thought to be familiar and reliable, has been holding secrets, subtle signals, and unspoken memories that will fundamentally change your understanding of yourself and how you relate to the world around you.
When Your Voice Goes Unheard
One of the most profound sources of medical trauma is feeling unheard or not believed by healthcare providers. It involves sitting in examination rooms, trying to describe pain that doesn't easily fit into diagnostic categories, only to be met with skepticism or dismissiveness. It also includes the exhausting process of seeking multiple opinions while managing pain, fatigue, or other symptoms that hinder daily life.
This trauma worsens when you see that advocating for your health has turned into a full-time job you never applied for or wanted. The effort you spend researching symptoms, preparing for appointments, and fighting for proper care is energy already drained by the very condition you're attempting to manage.
The Sensory Reminders
Medical trauma lives in the small details that others might never notice. It's the smell of new medications or topical creams you now have to use during flares, scents that become linked to your most vulnerable moments. It's the sound of pill bottles rattling, a constant reminder of your body's needs. It's the texture of medical tape being removed from your skin after yet another blood draw, leaving behind not just a minor wound but another layer of psychological residue. These sensory experiences become part of your daily landscape, creating a world where even the most ordinary activities can trigger memories of medical procedures, diagnoses, and the ongoing management of your health condition.
The Administrative Nightmare
The trauma goes way beyond the examination room and into the complicated world of healthcare administration. It's constantly juggling doctor appointments … cardiology on Tuesday, rheumatology next Thursday, lab work the following Monday, physical therapy twice a week, and don't forget the follow-up with your primary care doctor in three weeks. Each appointment also means time away from work, requires arranging transportation, and mental preparation, while you're also trying to handle everyday responsibilities, such as work deadlines, family responsibilities, household chores, and social plans. It’s trying to remember: “Am I supposed to fast before this test?” “Was I supposed to take this medication on an empty stomach, or was it supposed to be taken with a meal?” “Does this medication interact negatively with the 15 other medications I am taking?”. It also means having to go through your list of ever-growing medications before or during every appointment.
Your calendar feels like a complex puzzle where you're constantly moving pieces, trying to fit medical appointments around important meetings, your child's school events, or that friend's birthday dinner you've had to reschedule twice. The mental load of remembering which specialist needs what recent test results, who requires fasting labs, and which appointment demands you to bring your current medication list can become overwhelming. You create systems, color-coded calendars, detailed notes apps, and reminder alarms just to keep track of your healthcare needs. Or if you’re like me, a Type B person, you're also forced to develop stronger executive functioning skills in time management and organization.
The guilt is real when you realize you've forgotten about that routine check-up until the office calls with a reminder, or when you have to cancel plans again because a specialist finally has an opening. It's the ritual of blood draws that become so routine you know the phlebotomists by name, yet each needle stick still serves as a reminder of your body's betrayal.
The pharmacy becomes a battleground where insurance companies and healthcare providers compete over your prescriptions, leaving you caught in the middle. You wait in endless lines at understaffed pharmacies, watching other customers tap their feet impatiently while you wait for essential medications, not luxuries, for your basic health. The battles with insurance companies over coverage become a recurring nightmare, where decisions about your health are made by people who have never met you and may have no medical training.
And that’s just the medical side of things. I mentioned earlier the social implications of medical trauma. It’s feeling guilty because you have to bail on plans with friends at the last minute. You don’t mean to be flaky, but the fatigue, nausea, or other symptoms always seem to appear when you want to have fun and experience some normalcy. It’s wondering, “Did I check in with so-and-so about that life update they just shared with me?” “Am I taking up too much space with all my medical dramas?” “Am I exhausting to be around?”
Political Bodies
Your body becomes political in ways you never anticipated. Research funding for your condition becomes subject to the whims of politicians who may have never heard of your diagnosis. Medical resources that could improve your quality of life become inaccessible due to policy decisions made by people far removed from the reality of living with conditions that impact fundamental aspects of their daily lives.
For many, especially those with conditions that intersect with reproductive health, the political climate adds extra layers of trauma. The fear is real and justified: What if you need emergency care for pregnancy complications while living in a state with restrictive reproductive laws? What if your condition impacts your ability to carry a pregnancy safely, but political interference prevents you from accessing necessary medical care?
These aren't just abstract policy issues; they're real experiences that influence treatment choices, family planning, and even where people decide to live. Your zip code shouldn't determine your access to essential care, but for many with chronic conditions, it sadly does.
The Weight of Well-Meaning Words
Medical trauma also includes the emotional labor of managing other people's reactions to your illness. It's the minimizing comments from friends, family, and acquaintances who mean well but whose words land like small cuts. "My friend's sister's boyfriend's uncle had something similar, and they were fine." "Have you tried this juice cleanse?" "At least it's not cancer.” … (umm … except now it is cancer. For me, at least).
Even when people share their own experiences with chronic illness, the attempt to connect and relate can feel minimizing when their condition bears little resemblance to yours. Even if the diagnosis is similar or the same, you may experience it entirely differently. You find yourself in an impossible position, wanting to honor their experience while also needing to advocate for the unique challenges you face. You become the asshole in your mind for not being grateful enough for their attempts at understanding, even when those attempts miss the mark entirely.
Another way people comment on our bodies is when we gain or lose weight, change hair, etc. Their intentions may not be malicious, but they don’t understand the grief we feel due to our body changes. Personally, over the past eight months, I’ve fluctuated in weight, losing and gaining 50-60 pounds, and I’ve experienced hair loss, regrowth, and loss again. This has hurt my self-esteem because of my body image issues, rooted in my childhood as a dancer and soccer player. However, my body is now fighting its hardest battle, and the fact that I might not be at my “healthy” or “normal” weight proves I am still fighting. Comments like “You look great! It looks like you’ve lost weight!” are hurtful because my weight gain is due to inflammation from my immune system fighting itself, the large doses of steroids I’ve taken to calm my immune system, and now the need to eat to soothe my nausea during chemotherapy. At one point, when I lost 30 lbs during the peak of my dermatomyositis flare, mentioning my weight loss positively overlooked the fact that I was losing weight because I couldn't swallow food and was in extreme pain. My hair was, well, I guess, still is, such a big part of my identity. I had so much pride in my long, curly hair and spent years on a journey to learn to love my natural hair. Losing my hair feels like I’ve lost a big part of myself. I always felt that my hair was my trademark. Being a curly girl meant so much to me. I loved trying new products and convincing my other curly-haired friends to embrace their natural hair. Now, I have a stack of hair products that I’ve had to hide away because just looking at them is triggering and brings up grief that may seem silly to others but holds a lot of meaning for me. Losing weight and my hair was frightening and traumatic for me.
The Burden of Self-Disclosure
One of the most complex aspects of medical trauma is navigating when, how, and if to disclose your condition to others. Each situation requires a careful calculation of safety, necessity, and potential consequences. In professional settings, this becomes particularly fraught as you weigh whether sharing your diagnosis could impact your job security or advancement opportunities, especially as anti-discrimination protections face political rollbacks and DEI initiatives are being dismantled.
Navigating the job search involves difficult ethical choices. Should you disclose your disability during the interview, risking potential bias, or wait until after you're hired, which might lead to a negative employer reaction if you request accommodations? (To quiet that inner doubt, disclose when it feels right for you!) While the Americans with Disabilities Act offers some protections, enforcement remains inconsistent and has become more complicated under the current administration. Additionally, proving discrimination can be difficult without tangible evidence, such as emails or documented communications.
At your current job, you're often evaluating the workplace atmosphere. Is it safe to be honest about your needs? Might asking for accommodations be perceived as favoritism? Could your condition become the main way others judge your work? I feel anxious when sharing my needs, worried that others might exclude me, thinking they're helping by not adding to my burden. But I should be able to decide how much to share. Let me tell you my limit. Please don’t assume it for me. Not only is that belittling, but it can also be seen as discrimination. Hiding your condition can be just as draining as managing it, and revealing it sometimes feels like giving others a weapon to use against you.
The Social Tightrope
With friends and family, the trauma of disclosure takes a different form. You want to be treated the same way you always were, because fundamentally, you are the same person. But you also need others to understand that some things have changed, that your capacity might be different, that your needs might require accommodation. Sometimes it’s hard to even accept within ourselves that things have changed. It's a delicate balance between maintaining your identity and acknowledging your reality.
You might become overly conscious of being the mood changer in social settings. Your updates about life often lean towards the negative, covering new symptoms, changes in medication, insurance issues, and scheduling appointments. You catch yourself ending these updates with deflective remarks like, "But anyway, things could be worse... so what's up with you? How have you been?" You learn to act normal even when everything feels far from it, shielding others from the burden of your experiences while feeling isolated by your own compassion.
The guilt of being the friend who always seems to have something wrong becomes its own form of trauma. You want to be the person others can lean on, but you're learning to navigate when you have the emotional bandwidth to hold space for others' problems while managing your own. Sometimes, the most loving thing you can do is be honest about your limitations, but that honesty can feel like failure.
The Emotional Rollercoaster of Results
Medical trauma involves the complicated emotional process of interpreting test results that exist in shades of gray between "good" and "bad." It includes the crushing disappointment when lab results show that your inflammatory markers are still elevated, even if they've decreased since the last time. It also encompasses the mixed feelings when your doctor says, "This is good news" about results that still indicate you're not where you hoped to be. You find yourself managing multiple emotional truths at once: gratitude that things aren't worse, sadness that they haven't improved, and the tiring effort of continuously adjusting your expectations.
There's a particular kind of trauma in having to celebrate incremental progress when what you really want is to be well. Your support system might rejoice that your latest scan shows "no new lesions" while you're mourning the fact that the existing ones are still there. You learn to hold space for both relief and disappointment, for hope and frustration, often within the same conversation with your healthcare team.
The emotional impact of medical results, whether imaging, blood tests, or functional assessments, demands its own resilience. You build complex relationships with phrases like "stable disease," "within normal limits," and "better than expected." Each result calls for emotional processing, managing expectations, and often discussing with loved ones who may not understand why "good news" doesn't always feel positive.
The Fear of Tomorrow
Living with a chronic illness means living in a constant state of uncertainty and hypervigilance. It's the ongoing fear that the other shoe is about to drop, so you never feel completely at ease, even during periods of stability. Even during remission or successful management, you wake up each day scanning your body for signs of change. Is that itchy bump just a bug bite, or could it be the start of a dermatomyositis rash indicating a new flare? This hypervigilance becomes draining in itself. Your nervous system stays on high alert, interpreting every small change as a possible threat. You become skilled at reading your body's signals, but that skill comes with the burden of constant watchfulness. A headache isn't just a headache; it's a question mark. Fatigue isn't just tiredness; it's a potential sign of relapse.
The fear of losing independence weighs heavily, as does the terror of becoming a burden to those you care about. You're making incredible progress in your healing journey with one diagnosis, only to receive another that complicates everything you thought you knew about moving forward. Each new diagnosis doesn't just bring additional symptoms; it adds layers of uncertainty to an already unpredictable future. Major life goals, such as having children, getting married, advancing your career, or taking that long-awaited trip, become complex calculations involving energy, money, and medical stability. You start planning your life in weeks instead of years, if planning at all. The money you saved for significant life moments is often redirected to medical bills, copays, and treatments that insurance labels as "not medically necessary."
The Paradox of Excellent Care
Perhaps the most complex form of trauma is the one that exists even within positive healthcare experiences. You may have encountered specialists who genuinely listen, believe your account, and consistently provide excellent, attentive care. The staff around you might be compassionate, highly knowledgeable, and dedicated to your well-being. However, despite these positives, the fact that you need their help and your body requires this level of medical intervention can itself be a source of trauma. Trusting medical professionals and experiencing vulnerability during illness or injury can trigger emotions such as grief, loss, and sadness. It’s a complex emotional landscape where gratitude for good care coexists with the distress of needing it. There is an inherent sense of grief in needing ongoing care and acknowledging that your body isn’t functioning correctly, even when care is provided skillfully and compassionately. This layered reality highlights how trauma can be present even in situations that are ultimately helpful and life-affirming.
Living in the System
Our healthcare system often prioritizes profit over people, making access to care more dependent on insurance coverage than actual medical needs. Decision-makers, such as insurance adjusters, pharmaceutical executives, and politicians, may have never experienced a medical emergency firsthand or sat with someone facing a life-changing diagnosis. Individual bad actors don't just cause this trauma; it stems from systemic failures that create trauma as a byproduct of their everyday operations. Even when the system works as designed, many people still struggle to get basic care, ration medications due to costs, and face impossible choices between their health and financial stability.
Redefining Medical Trauma
Medical trauma isn't just what happens to you in a hospital; it's what happens to your life because of illness within a system that often fails to see your full humanity. It's the accumulation of small indignities, systemic failures, and the constant vigilance required to advocate for your survival. Recognizing this broader definition of medical trauma isn't about dwelling in victimhood; it's about validation and understanding. It's about acknowledging that healing happens not just in the recovery from illness, but in the recovery from the trauma of being ill within systems that aren't designed with your well-being as their primary concern.
For those experiencing medical trauma, know that your feelings are valid, your struggles are real, and your strength in navigating these challenges deserves recognition. For those who love someone with a chronic illness, or any type of disability or access need, understanding the breadth of medical trauma can help you provide better support and advocacy.
Medical trauma is real, it's complex, and it deserves our attention, compassion, and action to create systems that heal rather than harm.
A Personal Note
This exploration of medical trauma reflects my own understanding and experience, and I recognize that everyone's journey with medical trauma is deeply personal and unique. What I've described here may only scratch the surface compared to what others have endured, while some readers might not resonate with these particular experiences at all, and that's completely okay.
I'm not suggesting this is the only way medical trauma manifests, nor am I diminishing the very real trauma that occurs during medical crises, accidents, or emergencies. Those experiences are valid and significant. Instead, I hope to expand the conversation beyond the dramatic portrayals we often see in media to include the quieter, more insidious forms of trauma that can accumulate over time within our healthcare systems.
My perspective is shaped not only by my personal navigation of multiple diagnoses and the complexities that come with managing chronic conditions, but also by my professional work as an accessibility advocate. In this role, I witness daily how systems, whether digital, physical, or institutional, can create barriers or bridges for people with disabilities and chronic illnesses. I see how the same systemic issues that make medical trauma also manifest in inaccessible websites, exclusionary workplace policies, and environments that weren't designed with disabled people in mind.
This dual lens of lived experience and professional advocacy has made me acutely aware of how trauma compounds when systems fail us repeatedly across multiple domains of life. The medical trauma I experience in healthcare settings doesn't exist in isolation—it intersects with the accessibility barriers I encounter in my daily life and the systemic exclusion I work to dismantle professionally. When you're already exhausted from fighting for appropriate medical care, having to also advocate for basic accessibility accommodations in other areas of life amplifies the trauma.
Working in accessibility while managing my chronic conditions has taught me that individual resilience, while important, isn't enough. We need systemic change that recognizes the interconnected nature of these struggles. The same mindset that creates inaccessible digital experiences often underlies healthcare systems that dismiss patient experiences or insurance policies that prioritize profit over people.
Medical trauma exists on a spectrum, and there's room for all of our experiences within that understanding. Whether your trauma looks like mine, is entirely different, or falls somewhere in between, your experience deserves recognition, validation, and healing. I hope that by sharing these experiences from both my personal and professional perspectives, we can begin to see the broader patterns that need our collective attention and action.
