when you stop trusting yourself

I returned home to Frankfurt after spending six difficult weeks with my parents in Northern Ireland. I’d originally planned to be there for three weeks, although I changed my flight and travelled out three weeks earlier than expected because they needed support through a difficult situation.

By the time I came home, I was tired in the way that comes from having been away too long while still feeling as though much of what took me away remained unresolved.

Almost as soon as I returned, I started feeling “not right”. I had bowel symptoms that made me suspect there might be an infection in my intestines, and although whatever had irritated them began settling on its own by the following week, I still wanted to understand what had happened.

I contacted the Crohn’s nurses and submitted a stool sample. I expected the results within twenty-four hours. Nearly a week later, after I asked if my results had arrived, the nurses invited me into the hospital. I assumed I would speak to them. Instead, when my name was called, I unexpectedly found myself following my consultant into his office.

I’ve now lived with Crohn’s for almost twenty years across four different healthcare systems: the Netherlands, Switzerland, Austria and Germany. Each country has managed consultations, treatment and even my regular infusions differently. Every system has its own protocols, and every doctor seems to have their own view of what should happen next.

Over time, I’ve become familiar with how my body responds. I know what it likes and what it doesn’t. I know when something feels different from my usual Crohn’s symptoms, when medication is affecting me in a particular way and when something deserves a closer look. Knowing my own body, however, hasn’t always meant being listened to as the person living inside it.

I’ve had enough experience with doctors and nurses over the years to know that trained professionals can interpret the same situation very differently. I’ve also become more willing to question things when the information being shared with me doesn’t feel quite right. That willingness, though, is always much easier to recognise afterwards than it is while I’m sitting in front of the trained professional.

When my consultant called my name, I followed him into his office. He slouched into his chair and stared at me as though waiting for me to explain why I was there. There was nothing I could do except begin the conversation myself. I asked whether the stool sample I’d submitted had shown an infection.

Instead of answering the question directly, he moved quickly into discussing my medication trough levels and the possibility of increasing the frequency of my infusions. It wasn’t the conversation I’d expected to have. I’d gone in wanting to know what had caused the bowel symptoms that had appeared after I returned from Northern Ireland. And suddenly, we were talking about blood levels, medication and shortening the time between treatments.

At the time, I accepted what he told me. His explanation sounded reasonable enough, and I was trying to process information I hadn’t expected to hear. I asked what I could think to ask in the moment, listened to what he said and left the hospital with the conversation still circling around in my mind.

It was only while travelling home that something began to feel uncomfortable. I started reading about trough levels and realised they weren't connected to the stool sample I'd submitted the previous week at all. They came from blood tests taken before my previous infusion, around nine weeks earlier.

That detail changed the shape of the conversation in my mind. The question I’d asked had been about the stool sample. The answer I’d received concerned blood tests taken weeks before I’d even developed the symptoms that brought me to the hospital.

I began replaying the appointment. The way he’d stared at me at the beginning, waiting for me to start. The speed with which the conversation moved away from the stool sample. The feeling that I didn’t quite know what I should be asking, even though I’d arrived with one clear question.

The more I thought about it, the more uncomfortable I became. I couldn’t shake the feeling that something important had been missed and that the conversation had not been as open as it should have been.

I don’t like dishonesty. It’s something I have no time for. Once I stop trusting someone’s honesty, I find it difficult to trust anything else that follows.

I still didn’t know whether dishonesty was what had happened. That uncertainty was part of what made the experience difficult. I had no clear accusation to make and no certainty that anything had deliberately been withheld. I only knew that I’d entered the room with a question, left without a direct answer and later discovered that the information I had been given didn’t relate to the test I’d asked about.

Sitting at home with the appointment behind me, I could see the gaps more clearly. Inside the consultation, I’d accepted the direction of the conversation because the doctor appeared to know more. He had training, experience and authority. I was the patient sitting opposite him, trying to take in information quickly enough to respond sensibly. That’s often where my confidence becomes less certain.

I can know my body well. I can recognise when something feels different. I can carry almost twenty years of experience with Crohn’s through four different healthcare systems and still find myself questioning whether my own understanding belongs in the room once someone with professional authority begins speaking.

The following week, I was already due back at the hospital for my next infusion. By then, I had decided I’d take a few respectful questions with me. I didn’t want an argument, nor did I believe I knew more than the consultant. I simply wanted to understand what had happened and why my original question had never been answered.

I wasn’t planning to ask him. I was going to speak to the nurses, the people with whom I’ve gradually built a relationship of trust. That decision didn’t feel especially brave. It felt cautious. I was choosing the place where I believed I was most likely to be heard, while still trying to avoid being seen as difficult or confrontational.

Living abroad often involves learning unfamiliar systems while already dealing with the reason you need them. A healthcare appointment, official form or professional conversation can require more than understanding the information being given. There’s also the effort of working out how much to question, whether you have misunderstood something and how to speak without appearing disrespectful towards the person who seems to hold more knowledge or authority.

Sometimes the uncertainty follows you home.

This is part of what can surface in Personal Support sessions. A woman may arrive carrying a conversation she’s replayed several times, still unsure whether she missed something, overreacted or failed to speak when part of her already knew something wasn’t sitting comfortably. The situation itself may be over, while her confidence in her own judgement remains caught inside it.

Eventually, I recognised my discomfort. I’d researched the information, separated the stool sample from the earlier blood tests and prepared the questions I still needed answered. None of that changed the fact that I’d left the consultation without trusting what I was sensing while I was there.

I’m still learning that my lived experience belongs in those conversations too. Trusting myself afterwards, with time to think and everything laid out in front of me, has always been much easier than trusting myself while still sitting in the room.