You are allowed to fire your doctor

The message

It arrived in the middle of the night, which is when these messages always arrive, because that is when it is quiet enough to admit something.

They had recently found a doctor. They said they had been like me, and had fired the ones before. That those doctors were not a good fit and did not want to work with them, they wanted to tell them what to do. So they walked away, and now they have one they like.

And then: you should share this, I think it would help others.

So this post is theirs as much as mine. Another cancer fighter, who worked this out alone, and I am only the one with the website.

“They did not want to work with me. They wanted to tell me what to do. That is not a complaint about manners. That is a description of a relationship that cannot produce good medicine.”

Nobody tells you that you are allowed

This is the part that took me years, and I am a woman who spent almost thirty years running engineering projects and was not shy in any other room in her life.

A doctor is not a god. A doctor learned a profession, the way I learned mine and the way you learned yours. Years of it, hard years. It is a trade, and a demanding one.

And I will not write the sentence that usually comes next, the one about how they all deserve our respect. Some of them have earned every bit of mine, and I have met them. Others earned none of it, and I have met them too, and I am living in the results. The training is not the respect. The training is only the entry. What they do with it afterwards is the part that earns something, or does not.

There is one thing that makes it different from mine and from yours, and it is not holiness. It is the cost of being wrong. One wrong word from them and your entire life goes somewhere you cannot walk back from. Because once you do not have your health, it is the only problem you have. Everything else you were worrying about last week turns out to have been a luxury.

That is why we go quiet in front of them. Not because we believe they are gods. Because the stakes are so high that disagreeing feels like gambling with the only thing we have left.

And it is somebody you are engaging, with training you do not have, for a job that is happening inside your body. You are allowed to decide that it is not working. You are allowed to leave. You do not need their permission, you do not need a reason you can defend in public, and you do not need to be right.

And I have spent a long time asking myself how I did not see it. I built myself into an engineer over almost thirty years. Nobody handed me that and I did not start out as one. Almost thirty years of asking who decided this, where is it written down, what happens if the assumption is wrong, who signed it off. That is not a personality, it is a trade, and it is the trade I am good at.

I never once pointed any of it at my own treatment.

I know the reason now. I was rushing. You cannot examine anything at that speed. You cannot ask who decided this while you are already late for the next thing, and a question you do not have time to finish turns into a decision somebody else makes for you. Everything I know how to do professionally was unavailable to me in the one room where it mattered most, because I was never still long enough to use it.

That is a whole post of its own and I have written it: I stopped rushing into the day. Read it next to this one. Being able to fire a doctor and being still enough to notice you should are the same skill, and I had to learn the second one first.

Nobody says this to us. The entire architecture of a hospital says the opposite, and it starts with what we are called.

The word they use for us

Sit with this for a moment, because I did and it changed how I walk into a room.

Patient comes from the Latin patientem, which means suffering, enduring. That comes from the verb pati, to endure, to undergo, to experience. The noun, meaning a sick person under medical treatment, arrives in English in the late fourteenth century.

So look at what we actually say. When they call us a patient, they are calling us the one who endures. When they tell us to be patient, they are telling us to endure. They are not two words that sound alike. They are the same word. The thing we are, and the thing we are praised for being, are one and the same, and it is waiting quietly while something is done to us.

And there is a third one from that same verb, and it stopped me when I found it. Passion. From passio, suffering. Its earliest meaning in English, from about the year 1200, was the sufferings of Christ on the cross.

We know about enduring. Nobody has to explain that part to us, and none of us would still be here without it. What none of us notices is that a word written down in the fourteenth century is still handing out the roles in that room, and that it decided ours before any of us walked in.

Then look at the rest of it. We are given an appointment rather than a meeting. We are seen, as though we were not there until somebody looked. And when we disagree, we are described as difficult.

None of that language was built for a person who asks questions. So when asking one feels like bad manners, that is not weakness. The room was arranged that way before any of us arrived.

I stayed with one doctor for over ten years, long after I had stopped being listened to, because leaving felt like something only a troublemaker would do.

“The word for us, the word for waiting, and the word for the Crucifixion all come from one Latin verb meaning to undergo. That is the job description, and none of us applied for it.”

What staying cost me, and I will say it plainly

Two years ago a report about me said the word suspicious. That word means look again. It is a request, not a conclusion.

It was repeated to me as the answer. Nobody went back to it. My care was built on top of it, and the next doctor followed the line because the line was already drawn.

I was treated for two years for something I never had. And treated is the wrong word, because I was not being treated for anything treatable. I was being handled, on the strength of a sentence nobody had ever gone back to check.

And I accepted it. Not because I am a stupid woman and not because I had no questions. I accepted it because I was the patient, and the patient is the one who endures what somebody else has decided. I had been given the part and I played it all the way to the end of it.

“What it cost me did not come from disagreeing with a doctor. It came from not disagreeing.”

We do this everywhere else without thinking twice

Here is what makes me angry now, and it is not the doctors.

I have let an engineer go from my own company because he was not bringing anything to the table. That was a hard conversation and I had it, because that is what you do.

I stop using a face cream that breaks my skin out. I do not finish the jar out of loyalty. I do not wonder whether the cream will be offended. And I do not care what it cost me. The money went the moment I bought it. Rubbing the rest of it into my face does not bring any of it back.

I change my phone, my bank, my supplier, my brand of coffee. My clothes. My bedding. My socks. Nobody has ever once asked me to justify any of it.

I threw out an entire collection I had spent years putting together, skulls, every one of them chosen. I looked at it one day and it was not me any more. Out. I did not hesitate, and I had loved it.

And then there is the one person holding the key to whether I live or die, standing inside a system that treated me as invisible from the first day. That is the one I was afraid to ask a question. Firing him never once crossed my mind.

Every one of us already knows how to walk away from something that is not working. We do it weekly, without guilt, in every other part of our lives. And then we sit down in front of somebody who is deciding what happens inside our own body, and the ability vanishes.

And that last part is the one that keeps people in the chair longest. All those appointments, all that money, all those months. It feels like leaving would waste them. It would not. They are already spent, whatever happens next. The only thing still in your hands is what the next six months cost you.

It is not that we cannot do it. It is that in that one room we have been handed a part that does not include it.

And it is not only the doctors

Our own families have opinions. About which treatment we should have had. About how long we should have stayed with somebody. About whether we were allowed to say no to something.

When my cancer came back, somebody in my own family told me it was my fault, because I had refused chemotherapy.

That person has no medical training of any kind. Not a nurse, not a pharmacist, nothing, not one hour of it. She had an opinion, and she had the confidence to deliver it to a woman who had just been told her cancer was back.

And notice what that sentence actually does. It takes a disease and turns it into a verdict on the person who has it. If the cancer came back because of a choice I made, then the cancer is a punishment and I earned it. Nobody says that out loud. It is what the sentence means.

So on top of the illness, and on top of the system, we are carrying other people's certainty about a body none of them live in. That is how upside down this is.

“The permission we are looking for is not only withheld by the system. It is withheld at our own kitchen tables, by people who love us, or who say they do.”

And the same thing happens from behind the desk

Something goes wrong. A decision turns out to have been the wrong one, or a thing that should have been caught was not caught.

And then the explanation arrives, and the explanation is you.

You were anxious. You did not follow it properly. You left it too long before coming. You asked too many questions, or you did not ask the right ones, or you worried yourself into it. Whatever is to hand gets picked up and handed to you.

It is the easiest explanation available, for one reason: the patient is the only person in that room who cannot check it. We have no record of our own, we do not have the language, and we are frightened. There is nobody better to hang it on.

So that is a disease, a system, a family, and sometimes the professional as well, and all four of them have arrived at the same conclusion about whose fault this is. Us.

And it is the same muscle every time. The one that lets us leave a doctor who is not listening is the one that lets us put down an opinion from somebody who has never read a scan, and the one that lets us say, out loud and without apologising for it, that we are not taking the blame for a decision we did not make.

“And it does two jobs at once. It explains what happened, and it saves the person who decided from ever having to look at what they decided.”

Now the part they did not have to write, and I do

They found a good one. I have not.

What happened to me after I left is already written down, in Why thyroid nodules happen, with the number of doctors and what it cost. I am not going to tell it twice. The short version is that the search is still going.

And today there is nobody holding the thread. No general practitioner, and a report sitting there that still needs somebody to read it properly with me.

I am telling you this because an article that ends with and then I found a wonderful doctor is a lie by omission for most of the people reading it. Leaving a bad doctor costs you an afternoon. What costs you is the empty stretch that follows, and anybody who promises you there is no empty stretch is selling you something.

And I would do it again tomorrow. The gap is survivable. The other thing was not.

How to tell a difficult doctor from the wrong doctor

Not every uncomfortable appointment is a reason to leave. Some of the best medicine I have had was delivered by somebody blunt. So this is the line I use now.

If you are reading that list and recognising somebody, you already knew. You have known for a while. The list is just permission.

• A difficult doctor disagrees with you. The wrong one does not hear you in the first place. Those sound similar in the room and they are opposites.
• A difficult doctor explains why not. The wrong one says no and moves on, and the reason never exists anywhere you can look at it.
• A difficult doctor changes their mind when something new appears. The wrong one cannot, because the decision was made before the evidence and defending it has become the point.
• A difficult doctor writes things down. The wrong one would rather it was a conversation you cannot quote later.
• A difficult doctor says I do not know. The wrong one has never once said it in front of you.

What to take with you when you go

This is the practical half and it matters more than the emotional half, because what you leave behind you cannot get back easily.

The sentence that gets your file

Please send me a complete copy of my medical record, including all imaging reports and the images themselves, under my right of access. Please confirm when it will be ready.

• Your records. All of them. Imaging reports, laboratory results, letters, discharge summaries. Not a summary, the documents. They are yours by law in Europe and you do not have to say why you want them.
• The images themselves, not only the reports on them. A new doctor who can look at the picture is in a different position from one reading somebody else's sentence about it.
• Ask in writing and keep the copy. An email asking for your file is also the evidence that you asked, on a date, which matters if it does not arrive.
• Do not announce it. You are not obliged to tell anybody you are leaving, and asking for your file is a normal request that nobody can refuse. Collect first.

And then the hard bit

You will have to start again with somebody who does not know your history, and you will have to tell the whole story from the beginning to a stranger, which is exhausting in a way that people who have not done it do not understand.

I have been doing it for sixteen years. Sixteen years of carrying the same story from one room to the next, saying it again, watching somebody write down a shorter version of it than the one before. In the last five months alone I have printed the same scan about fourteen times. Not fourteen different documents. The same one, fourteen times, because I was looking for a doctor.

And it is not only when you change doctors. Stay with the same team for ten years and you will still be telling your story to strangers, because treatment makes its own appointments. Every drug opens a door onto a new problem, and the new problem belongs to somebody else. A different specialist, a different building, a different form, and the whole history again from the beginning, to somebody who has fifteen minutes.

Nobody is in charge of the story. The patient is the only person carrying all of it, and the patient is the one with the least strength to carry anything.

That is the thing I am building, and this is the honest reason I am building it.

What is already in My NEDPath

A profile builder. It takes what you have and makes the one page: a clear, printable medical profile you can hand over or send ahead, so the next stranger starts from your history instead of from your memory of it at nine in the morning in a waiting room.

You can view it, share it or print it from your phone. It is built for people with a long history, with neuropathy, or with a hand that does not fill in forms any more.

It is a personal health companion. It is not a medical device and it does not diagnose anything.

There is no modest way to say this, so I will not try. It is the feature I am proudest of, because it fixes the thing that has worn me down for sixteen years, and because the day I needed it most was a day I had no doctor and a folder of paper.

Two things make that smaller.

You may need more than one attempt. I am on my sixth. That is not failure, that is the search, and the search ends.

• Patient, from Latin patientem, suffering, enduring, from pati, to endure, undergo, experience. The noun for a sick person under medical treatment dates from the late fourteenth century.
• Passion, from Late Latin passio, suffering, from the same verb pati. Its earliest English sense, around 1200, was the sufferings of Christ on the cross.

It is already changing

I see it more every week. Not only women, although I notice the women, because I know what it costs us to be called difficult. More and more people are saying it out loud: no, not this doctor, and then standing up and leaving.

They are not doing it because they are braver than we were. They are doing it because they saw the red flags and believed themselves. Believing yourself is the thing, and it can be learned.

You are not a difficult patient. You are a person who has to live in this body after everybody else has gone home. If the one you are sitting in front of does not want to work with you, that is information, and it is allowed to be the last appointment.

Where the words come from

Patient, from Latin patientem, suffering, enduring, from pati, to endure, undergo, experience. The noun meaning a sick person under medical treatment dates from the late fourteenth century.

Passion, from Late Latin passio, suffering, from the same verb pati. Its earliest English sense, around 1200, was the sufferings of Christ on the cross.