10 Years in IT with a Schizophrenia Diagnosis: Survival Tips

My diagnosis is paranoid schizophrenia. I fell ill a year after graduating from university. For 10 years now I've been working in IT, and my current position is senior software engineer. I want to share what problems a person with a serious mental illness may face when building a career.

This is a practical article. I will barely touch on my symptoms or describe my personal experience. There are plenty of such articles without mine, including on Habr. There's even an entire publishing house that specializes in books about the schizophrenic experience.

Demographics

Schizophrenia affects 1 in 100 people. The average IQ of a person with schizophrenia is 90, while for a normal person it's 100. This means there are fewer people among schizophrenics who are smart enough for engineering work. People like John Nash or Bobby Fischer (though it's debatable whether he had schizophrenia) are especially rare. In only 25-30% of cases does schizophrenia not affect cognitive abilities. Mostly they take a hit. And not everyone will choose programming as their profession.

There are few programmers with schizophrenia. On all of Reddit, after extensive searching, I found about 15 people. On all of Habr, you'd find maybe 5. In short, don't worry — I probably don't work at your company. You're unlikely to encounter actual schizophrenics in the job market for qualified programmers (except, of course, in cases where the diagnosis can be clearly identified from the resume).

There are very few of us, but we exist. And schizophrenia is absolutely not a reason to give up on life, go on disability, and sit within four walls.

Should You Disclose Your Diagnosis?

Of course not — never, to nobody, and under no circumstances. I work in enterprise development, for a foreign client. Here people are afraid to let juniors near a client meeting — "what if he blurts something out." And then there's this kind of risk. If it comes out, they might even fire you — business is business. Or maybe they won't fire you if you're lucky enough to work at a modern, progressive company. But for instance, they won't promote you. Or won't give you a raise.

Generally speaking, we're not exactly welcome. According to a survey, 38% of residents would happily send me away and isolate me somewhere. Anywhere, just out of sight. In IT, though, the audience is far more progressive than the average.

The late Frederick Frese, a PhD in psychology who had schizophrenia, advised:

"You can openly talk about your diagnosis only if you have tenure, like Elyn Saks, or if you're about to retire."

Choosing Medication and Side Effects

I spent my thirties zealously hating psychiatrists, refusing medication, devouring anti-psychiatry literature and stories about the Big Pharma mafia. The result — three psychotic episodes, two hospitalizations. Each time I was forced to change jobs one way or another; during episodes I sent strange encrypted messages to friends. Many people stopped talking to me after that. Nothing good came of it. You have to take your medication.

Terry Davis immediately comes to mind. Undoubtedly a smart and talented person who refused medication and as a result spent his entire life on dubious pursuits. What could he have accomplished if he'd taken medication? He probably wouldn't have become famous, but he'd still be alive and working somewhere as a programmer. Another example, of course, is John Nash, who never took medication. His schizophrenia receded — that often happens with age. But let's not forget that before that, John Nash spent 20 years talking to aliens. And only by a miracle did he avoid ending up on the street. Few can afford such a luxury.

In my forties, you want peace and a stable life. The main side effects of second-generation antipsychotics were hormonal imbalances, cardiovascular problems, excessive sedation, and weight gain. There are already drugs on the market that don't stress the heart, don't cause significant weight gain, or hormonal disruptions. Unfortunately, not all of them will work for everyone. But it's worth trying.

But there are other side effects. For example, the medication I take destroyed my "a-ha moments" — those flashes of insight. I still understand various things, but understanding comes quietly and peacefully, without eureka moments. I miss them. In general, medication will inevitably make life less interesting, vivid, and rich. But far more predictable and stable — overall, tolerable.

Choosing a Psychiatrist

To select medication and get prescriptions, you'll need a psychiatrist. Probably more than one. A state-assigned psychiatrist is roughly equivalent in quality to a public defender. Here's what I've heard from state psychiatrists:

"Work is hard for you? Then choose — either medication or work."

"Gaining weight? Well, that's a good thing!"

"Why do you need those new antipsychotics? Take haloperidol! They're all the same — they just squeeze money out of you." (Haloperidol is an old drug with very bad side effects: double vision, muscle spasms, and long-term use leads to incurable neurological consequences. In 2013, a paper was published showing this drug is neurotoxic.)

District psychiatrists certainly do their job. They help patients get some medications. They help with disability paperwork. They make sure their patients don't end up on the street. But if you want something more, you should see a private specialist.

But even a private specialist will, at best, treat based on statistics and averages. Trial and error is inevitable. In a worse case, you'll get a doctor susceptible to advertising, but again, they'll prescribe new trendy medications — which isn't so bad, since drugs really are getting better and better. In the worst case, they'll treat based on "experience." As practice shows, having experience is actually more of a negative phenomenon.

For example, a doctor refused to switch my medication because she had a patient who had a flare-up on that drug. I had many arguments: schizophrenia manifests differently in everyone; the world is full of people on exactly that drug without flare-ups; flare-ups sometimes happen even on stronger medications; it's not certain that patient was taking the drug correctly and on time. All arguments hit a wall.

When you hire a psychiatrist, they should act in your interest. Your interests include not only reducing the risk of illness but also minimizing side effects and returning to full working capacity. If the hired doctor doesn't act in your interest, you should part ways without any regret.

Flare-ups and Hospitals

Flare-ups happen. You take your medication religiously day after day, and still a flare-up occurs. The most commonly used technique for flare-ups is to increase the medication dose and observe. You might have to do this yourself. Perhaps with a doctor you trust. And if increasing the dose doesn't help, the flare-up needs to be managed with more serious medications. There are long-acting drugs on the market whose use can manage the most severe episodes. The key is to react in time.

A flare-up can lead to hospitalization. Everyone fears this. You end up in a psychiatric hospital for a long time — at least three weeks. The hospital resembles a prison. As for the staff — orderlies, nurses, and doctors — they're of course not monsters or sadists. But they're embittered people. Tired, burned out, cynical, and indifferent. Who are paid very little for very stressful work. What's also frightening is that a sick leave certificate stamped by such an institution can easily get you fired. You have to find workarounds here. Perhaps you shouldn't take sick leave from there at all, and get it from somewhere else instead.

Sometimes the patient notices the flare-up first. Sometimes close ones do. That's why it's good to live with someone. One study found that this very fact improves recovery chances. I see nothing wrong with moving in with your parents for a while. This reduces the probability of a successful personal life, but let's be honest — a successful personal life with such a diagnosis isn't particularly promising anyway. For women, things are somewhat better though. A spouse can also fill this role, of course. Or a therapist. In short, someone needs to be there.

Flare-ups are a slippery topic. It's better, of course, to prevent them. Without medication, the probability of a flare-up is about 80% per year. In any case, you need to be ready to pack your bags and look for a new job. Possibly in another city.

Psychotherapy

Just a few years ago, cognitive behavioral therapy was considered the treatment standard. Guidelines stated that medication was mandatory, but without psychotherapy on top of it, you simply couldn't manage. Now attitudes have changed and psychotherapy is viewed with skepticism. I went to cognitive behavioral therapy. There was little benefit. I can't say they were exactly "squeezing money out of me" — there was a person sitting there who listened to me and suggested things. But it didn't work out — the therapist and I didn't click.

Nevertheless, I consider psychotherapy useful. Once the crisis has passed, an enormous number of fears remain. How will I live from here on? Will I cope? What if there's another flare-up? And I have a gap in my resume — what do I say at the interview? Behind these fears are real problems. You can work through them with a therapist, but don't look for causes in childhood trauma or use NLP techniques — you just need a competent, emotionally uninvolved conversational partner. Before going to a therapist, you should first clearly formulate all your problems. Time there is an expensive resource. Choose a smarter psychotherapist, don't focus on specific schools and methods, but of course a psychoanalyst and an NLP practitioner probably won't be a good fit here.

Psychotherapy is often presented as a magical place where miracles happen. It's more like an optional supplement to improve quality of life. It's worth going when your condition has stabilized and you have money you don't mind spending.

Cigarettes

Another difficult question. 80-90% of people with schizophrenia smoke. Allen Carr claims in his book that cigarettes create anxiety and interfere with concentration. Research — and I'm speaking here only about studies conducted on people with schizophrenia — shows that cigarettes help cope with anxiety and improve concentration. Cigarettes help with schizophrenia.

On the other hand, the harm from smoking is well known to everyone. If possible, and if finances allow, it's worth quitting cigarettes and switching to other methods of getting nicotine, whether it's a patch, gum, or vape. Giving it up entirely — well, I don't know.

Avoidance

In psychology, for some reason, avoidance is considered a bad, ugly coping strategy. Perhaps when avoidance reaches the level of agoraphobia, it's something bad. I, for example, get overstimulated very easily and react painfully to stress. I see nothing wrong with giving in to avoidance.

For example, I only go to stores after dark. There's a huge list of people I prefer not to cross paths with. One person I know with schizophrenia turns off color on his computer and works with a black-and-white screen to avoid extra stimulation.

I spend most evenings studying technologies. Partly because of my fear of losing my job and becoming irrelevant. But largely because I don't know what to do with my evenings. This is how I avoid a full, rich life.

I try to get out of business trips by every means possible — I experience severe anxiety when traveling. But ultimately I feel good, and I have no desire to change anything in these areas of life.

Being a Bad Programmer

Schizophrenia forces you to temper your ambitions. If before I chased money and interesting projects, now I choose quiet and calm corporate long-term development. You learn to find your own kind of beauty in this. You see how a system develops over the years, where this or that design decision led. You have the opportunity to take on a large chunk of functionality and gradually grow and develop it. In short, programming transitions from dragon-slaying mode into something more like gardening.

I have a very vulnerable and sensitive character. Any clash of interests causes anxiety. On the project, I'm mostly a "yes man" — I can muster up the courage to object, but I give in easily and accept management's point of view. In short, not a fighter. Before my illness, I looked down on such people.

During code reviews, it's very hard for me to reject someone. I'd rather carefully ask — are you sure this is what you wanted, maybe you meant something else? It hurts me when I press the "Needs work" button. I understand that the person probably won't be mortally offended and seek revenge. But I'll still be nervous.

I lack self-confidence. I constantly consult either Stack Overflow or the team. I'm afraid of missing deadlines and upsetting management. This often leads to overtime. That "what if they say something?" I agree to evening and weekend overtime easily. Work calms me down. I get distracted from my sad thoughts and problems.

The hardest thing for me is before releases, when something breaks and needs fixing. When several people are constantly writing in chat and expecting action from me. I quickly get overloaded and become very nervous. I step away from the computer, smoke until I calm down, and come back.

My work involves a lot of fear-driven development. Being tolerable to people has become far more important than being correct and right. I do everything completely differently from how seasoned professionals advise.

I'm a bad programmer — it took me a long time to get used to that. And yet, my own peace and comfort ultimately prevail over the desire to be a cool guy who does everything right.

Being Sad

Schizophrenia is not just your own tragedy. Inevitably, you're plunged into a whole sea of others' grief. Pain that is completely meaningless, random, and entirely undeserved. Sadness and even occasionally suicidal thoughts — that's normal. You need to take a calm attitude toward this too.

Resources

A list of books that helped me recover:

1. Elyn Saks. The Center Cannot Hold
2. Milt Greek. Schizophrenia: A Blueprint for Recovery
3. Kurt Snyder. Me, Myself and Them
4. Ann Olson. Illuminating Schizophrenia

The author thanks the /r/schizophrenia community for the warmth and support received during the most difficult moments.