Editor’s Note: This article was written and submitted to us by Pamela Mason, Patient Speaker & Advocate.

Sometimes, the hardest part of a medical appointment begins days before I walk through the door. My mind starts racing. What if something else is wrong? What if another treatment causes complications? What if I need another surgery?

After 17 years of living with severe, complex chronic illnesses, I know how quickly life can change. I have entered medical situations expecting one outcome and faced something entirely different. Those experiences do not simply disappear when the hospital doors close behind you.

For many people living with rare and complex diseases, the fear is not always about the next appointment. Sometimes, it is about everything we have already experienced and everything we worry could happen again.

When Medical Experiences Leave Their Mark

My healthcare journey includes short bowel syndrome, gastroparesis, rheumatoid arthritis, osteoporosis, and a metabolic bone disorder, among other conditions. I have experienced severe malnutrition, repeated surgeries, hospitalizations, fractures, and complications that changed my everyday life.

There were times when my bones were so fragile that walking carried the risk of another fracture. I have spent weeks recovering from surgery, unable to do ordinary things, wondering how much more my body could endure.

A fracture may heal. A surgical incision may close. A medical crisis may stabilize. Yet the memories of what happened, and the fear of what could happen next, do not necessarily disappear at the same time.

When Fear and Trust Exist Together

I want people to know that I have wonderful healthcare professionals in my life. Physicians, nurses, and specialists have listened, investigated, advocated for me, and helped me through frightening circumstances. I appreciate and trust them.

And yet, I still feel anxious before appointments and procedures. Sometimes that anxiety begins days
beforehand. It is not necessarily because I distrust the person caring for me. It is because I remember
previous complications and unexpected outcomes.

I can be sitting across from a compassionate physician discussing a treatment while part of my mind remembers everything I have endured. Will this help? What are the risks? What if something goes wrong?

These are not questions I ask to be difficult. They are questions shaped by experience. A patient can trust a physician and still feel frightened. Both can be true.

Understanding Medical Trauma Without Assigning Blame

Medical trauma can arise from frightening or overwhelming healthcare experiences, even when care is
necessary, appropriate, and compassionate. An unexpected diagnosis, painful procedure, emergency
surgery, serious complication, or prolonged hospitalization can leave emotional effects.

Sometimes distress also involves feeling dismissed, misunderstood, or powerless. I have experienced difficult interactions when my symptoms were not initially understood. But I have also experienced extraordinary compassion. Both are part of my story.

Medical trauma does not automatically mean post-traumatic stress disorder (PTSD). People may experience anxiety, distressing memories, or fear in healthcare settings without meeting the criteria for PTSD. And concern about complications may be a realistic response to serious illness.

Recognizing these experiences is not about blaming doctors or labeling every fear as trauma. It is about
understanding what patients may carry emotionally into their next decision.

The Invisible Responsibility of Being a Complex Patient

Living with multiple chronic illnesses means managing more than symptoms. There are appointments,
specialists, medications, test results, procedures, and decisions. Sometimes we become responsible for
connecting the pieces of our own complicated medical histories.

Being a patient can feel like a full-time job I never applied for and cannot simply leave. When previous experiences have been frightening, even another routine decision may feel overwhelming. We are weighing medical information while remembering past complications and wondering whether we can face another setback.

I began recognizing how those experiences influenced my decisions. That realization changed the direction of my advocacy.

Why I Created the Medical Trauma Decision Cycle and DECIDE Toolkit

I understood that my healthcare experiences had affected me emotionally. But awareness alone was not
enough. I still had appointments to attend, treatments to consider, and decisions to make. I could not stop participating in healthcare because I was frightened.

I began asking how patients could recognize the connection between past experiences and present decisions without dismissing their feelings or allowing fear to become the only consideration.

Those questions inspired me to create two patient-centered educational resources: the Medical Trauma
Decision Cycle and the Medical Trauma DECIDE Toolkit.

The Decision Cycle encourages awareness of how previous healthcare experiences may influence present thoughts, emotions, and decisions. The DECIDE Toolkit offers a structured approach to focusing on a decision, examining information, consulting support, identifying options, deciding when ready, and reflecting afterward.

Neither resource tells patients which medical choice to make. They are not diagnostic tools, trauma
treatments, or substitutes for professional medical or mental health care. They are intended to support
reflection, preparation, communication, and participation in care.

I created them because patients deserve more than being told not to worry. We deserve practical ways to
organize our concerns and use our voices.

Healthcare Works Best When We Work Together

Patients bring knowledge of their bodies, lived experiences, values, and concerns. Healthcare professionals bring clinical expertise, education, and experience. We need both perspectives.

A physician asking, “What concerns you most about this treatment?” can open an important conversation. A patient saying, “I have had a frightening experience before, and I am anxious,” can help the care team understand what support is needed.

Writing down questions, discussing risks and alternatives, and bringing a trusted support person may help. If anxiety persists or interferes with daily life or necessary care, support from a qualified mental health professional can be valuable.

The Courage to Keep Showing Up

After 17 years, I wish I could say I have stopped feeling anxious before medical appointments. I have not. But moving forward does not mean pretending my fears do not exist.

I can acknowledge my anxiety and still ask questions. I can remember difficult experiences and still appreciate the professionals helping me today. I can feel uncertain and still participate in decisions about my care.

Somewhere, another patient may be sitting at home days before an appointment, wondering what might
happen next. If that is you, your fears deserve understanding, your questions deserve thoughtful answers, and your voice belongs in conversations about your care.

Our medical experiences may shape us, but they do not have to silence us.

Every patient deserves to be seen. Every patient deserves to be heard. And every patient deserves to be
believed.