16 December 2014

Living with histamine intolerance and other things, part 3: How to be a professional patient

You might want to read part 2 first.

Last year a doctor told me to take histamine antagonists every day and I lowered the dosage almost immediately to about 20%, because taking it every day was too much. This worked well for about a year but I was slowly acquiring debt that I had to pay back later. Histamine is essential for the body and if you start messing with it, the body fights back. I tried to get off the medication, but then I couldn't sleep instead. At the same time my stomach problems got worse. Sometimes I had to give lectures and I could only do a good job if I didn't eat for 18 hours. Paradoxically, my stomach didn't like food.

I started taking too many sick days. It reached a point when I felt truly powerless and I cried for the first time in ages. But as one of the best amateur psychologists Louis CK says, you are lucky to live sad moments (the important bit starts at 1:11, but you should watch the whole video).

When you have the three basic F's—family, friends and F-You money—you have absolutely nothing to worry about and the sadness will quickly disappear.

After this moment I went on a sick leave for a couple of months. My suspicion for stomach problems turned out to be correct when I received a new stomach diagnosis while visiting my parents in Slovakia. I don't see a point of revealing this one, so I just call it diagnosis X. After starting the treatment, I have immediately gained 4 kilograms, although there are still some unresolved issues and I have a suspicion that there is a deeper problem causing both histamine intolerance and diagnosis X.

I am still taking very cold showers and try to exercise, but I have to agree with the guy who once said:
Cold showers are a great tool, but they are not a solution to all your problems. – Lukáš Poláček
I know, I know, I'm quoting myself, but that is not the first time I have done that, so you have to deal with it.

It was time to go back to Sweden. This time I came back prepared for the Swedish doctors.

Professional patient

A few years ago a private company mailed my blood to Germany for a histamine intolerance test, because the diagnosis is mostly unknown in Sweden. In the next couple of years I got used to explaining the diagnosis to the Swedish doctors. This year after getting my diagnosis X in Slovakia, my general doctor told me that Sweden doesn't have a tradition of treating it. Cool, now I can educate the Swedish doctors about 2 diagnoses at once!

Even though I have read quite a lot about my problems, I decided to do much more and become a professional patient. I started by reading some medical books as well as various internet resources. Recently I have also started to read scientific papers in medicine. If you ever plan to be sick, don't be scared of medical textbooks, they are quite readable and often have nice pictures.

The doctors of course don't like patients who self-diagnose themselves and I'm not encouraging you to do the same. When you are in a restaurant, you don't go to the kitchen and show the cook how to sear a steak; but when you order Château Lafite year 1869 and get 1898 instead, you immediately recognize the difference in taste and complain. A doctor once tried to give me medicine that would not work. After telling him that, he admitted I was right and referred me to a specialist instead.

I think most doctors take this self-education well. One time I couldn't recall the Swedish word for a certain body part, so I used the Latin word instead and the doctor asked me if I study medicine. I think that actually helped my interaction with him.

I want to thank my friend Miro who has been a professional patient for a long time and has been an inspiration to me.

Misaligned incentives

When it comes to saving for retirement, I advise my friends to manage the savings themselves, because whether you leave it to the government or a private company, they will not act in your best interest. The problem is that their incentives are not aligned with yours (except for Vanguard, whose founder should get a medal). If you don't want to get screwed, you should educate yourself or ask a friend whom you trust.

You will encounter misaligned incentives in the health care, too. For a doctor paid by the government you are an expense, so they might make as little effort as possible. A private doctor might keep you sick, so that you return many times and keep paying. And then there are various scammers trying to sell you expensive placebos. Believing that the government will act in your best interest is as naive as believing that a private company would put your interests before their profit.

So far the only solution I found to this problem is self-education. This is not the first time that reading about economics and game theory helped me solve some real life problems. That's why you should read non-fiction books too.

Swedish health care

Sven C. Larsson in the book Remaking America mentions examples of patients treated badly by the Swedish health care system. He compares some situations with the removal of life boats from Titanic, because not enough are available for all the ship's passengers.

A sure way to achieve equality is to make everyone suffer. But once people know about it, they start to cheat. They would bring inflatable life boats on Titanic in their baggage. I brought my inflatable life boat by getting a diagnosis in the Slovak health care system and educating myself. This is to be expected, since equality is an unstable equilibrium.

I'm not saying private doctors are perfect; they have made mistakes too. Two months ago, I borrowed a medical book that was co-written by a private doctor that I visited before. Apparently he's an expert on the topic and he is often interviewed in the national media. Despite all this he also didn't find diagnosis X.

Experts will continue making mistakes, but the government-funded system does very little to counteract them. You might meet a doctor that can't help you and then you need to wait 2 more months for another one, while you continue to suffer. If you are in Sweden, buy private insurance; it's cheap and worth it.

There are some positive things about the government-funded system, for example it's world-class when it comes to preventing people from dying. However, people who are not in the immediate danger of dying need to wait for a long time and are often given a bad service.

After 4 years of lousy treatment and low quality of life, I don't trust the Swedish doctors anymore whether they are private or government-funded. I would appreciate any tips for other countries with a functioning health care system.

My PhD

With all these health problems and uncertainty, I decided not to finish my PhD. The sick leave that I accumulated over the years and working 20% at Spotify would still give me about a year to finish, but health is a top priority now. I am still taking a couple of sick days every month and I am slowly writing a small thesis to finish with a smaller degree called licentiate (the degree is almost unknown outside of Sweden).

Even if I won't finish with a degree I wanted, all the scientific education has proved useful when reading scientific papers in medicine. And I have probably read more medical than computer science papers this year, so I already feel like I switched fields. Recently I have seen some exciting studies done on rats, guinea pigs and cows that show that some of my problems might be treatable. It's time to replicate these studies on humans.