Wastelands of OCD

No pain in the world can describe this hell. I know that the more I exaggerate, the less I'll be understood, and I will lose my credibility. We live in an age where people have to shout to be heard. But we must speak about this hell. We can't pretend it doesn't exist. I can't believe we're doing this.

 

This is a disease where you can't decide what to think. Fear is a constant threat at the back of your mind. The possibility of things going wrong is real and tangible. This is a philosophical disease. The more intelligent you are, the harder it gets. I don’t know how to explain it to normal people. Perhaps it would help if the greatest writers of the world wrote books about it and made it a part of their art. My plain words will hardly convey any emotion to the internet reader who skims through. But this is the tool we have. And the more I cry out, maybe someone will hear.

 

Yes, there is a disease that almost no one in the world truly understands. And the sufferers endure horrific torments. No, it's not cancer. I wish it were cancer. Believe me, that would be so much more peaceful... This disease is not only unknown to societies and random people on the street, but also to the medical community. Unfortunately, it’s known only to a very small minority of doctors who specialize in this field. Wait, there's more. The treatment for this disease is also very difficult and an incredibly painful process. The problem here is that if the disease were cancer, the patient would have the ability to choose whether or not to recover based on their own preference. But in this disease, when the patient is shown the way out, they lack the mental strength to follow it. I know I’m not explaining this well. I’m wasting my little chance, aren’t I?

 

Imagine there’s a big lion in the room, and you have to live with it. Most people, when you tell them about the lion, will try to reassure you that the lion isn’t as dangerous as you think, and that you’re exaggerating. But unfortunately, because of a glitch in your brain, you are only temporarily convinced by these reassurances. The idea that the lion is not dangerous brings you comfort for a moment, yes, but soon the fear returns. And when I say fear, I don’t mean simple anxiety – I mean a fear so intense that your heart races, your forehead sweats, and you can’t breathe. It’s there every moment, except in sleep. Even then, it fuels your nightmares. However, when someone comes up to you and whispers, “Hey, buddy, calm down, the lion is gone, it’s not there,” you feel a brief moment of peace. The duration of this peace depends on your current perception of danger and how many times you've heard this reassurance. Sometimes, rare comforts last a few days, but most of the time, no comfort lasts beyond 10-15 minutes, and you’re back in that sea of terrible anxiety.

 

It’s easy to write words like these, isn’t it? Anxiety – what a hollow word when written. But living it is something else entirely. A therapist once calmly said to me, “I know you’re going through tough times.” He said it so calmly and clearly that it felt like this previously incomprehensible issue finally had a straightforward explanation. I wanted to tell him that what he referred to as 'bad days' was, for me, an inability to breathe. But I felt frustrated when I realized that there was nothing more I could say to make him understand. I had already said everything there was to say about the pain. That morning, for the first time in days, I found the strength to change my underwear. Because I didn’t have the freedom or energy to do even the tiniest thing to live decently for myself. All I did was try to get through the day without committing suicide and desperately search for clues on treating my philosophical illness. Yes, I almost ended it all. Can a person rejoice at changing their underwear? But there I was, on a different mental plane than the doctor, and he didn’t have to feel the physical part of my suffering as it was. All he wanted to focus on was helping me learn how to respond to my bad days. No matter how much I talked about various kinds of pain, heart palpitations, chest pain like a sudden electric shock, or the sensation of walking around with numb, burning cheeks as if there were blood bags in them, all these words fell into a general category labeled “bad days.” The doctor wasn’t a bad person and didn’t lack the desire to understand my pain. But the best he could do was to teach me to manage the process, which meant I had to learn to ignore the terrifying thoughts causing my bad days.

 

In other words, I had to live with the lion in the room. When the lion tried to pounce and tear my flesh, medicine told me to live with it. I wasn’t allowed to run away, go to the next room, and shut the door. For example, I couldn’t call for help or grab a knife and swing it to defend myself. Because according to the prescribed treatment, as the lion tore my flesh, I had to carry on with my daily tasks. The lion could appear whenever it wanted, and it could suddenly be there behind you, ripping out your neck artery while you were working or watching TV. Wait, there's more: my doctor told me that if I were in one of those rare moments when the lion hadn't appeared on its own, I had to go find it and provoke it. The lion wasn’t far away, after all; I just had to go into the next room, wake it up, or make it angry. For months, even years, every day, regularly. If these statements sound like exaggerations or fancy words for dramatic effect, I want you to know they’re not. I wish they were. Then there’d be no such thing as obsessive-compulsive disorder, and we could all live peacefully.

 

Anyway, to sum up, I learned to live with the lion and tame it. There were times I managed it with the help of a few antidepressants or by perfecting my mental tactics. I’ve had two major periods of suffering in the past 30 years. Each lasted about six months, and the suffering was beyond words. I wished to be blind, envied people with cancer. The suffering didn’t end all day long. The only way to calm the dreadful thing called anxiety was to convince yourself that you were safe from the lion. But as I said before, this only worked for a short while. Sooner or later, when the lion returned, I needed new words of reassurance to bring my anxiety levels back to a point where I could breathe and sit still.

 

As you can see, my torment took place inside my head, and those looking from the outside had no idea of my condition. In fact, I wasn’t even allowed to tell my family or anyone else about my troubles, because if I shared my terrible thoughts with them and asked for comfort, I would shock, upset, and terrify them.

 

I know you don’t understand. Let me explain. Imagine a person suffering from OCD has involuntary thoughts about finding children sexually attractive. Or think of a new mother battling relentless, uncontrollable thoughts about stabbing her baby. Imagine this poor woman going to her husband and saying, “Honey, could you change our son’s diaper? Because I have thoughts about smothering him with a pillow.” In this case, the unfortunate man’s feelings would range from supporting his wife to protecting their child, but first, he would experience immense shock and loss of trust.

 

As you can see, talking to people about the lion while you’re fighting it can do more harm than good, potentially ruining your relationships. This means that someone under the influence of horrible feelings and thoughts, seeking support from those around them, may end up completely alone. That’s why an OCD sufferer envies a cancer patient. Because while the cancer patient is suffering in bed, their loved ones come to hold their hand with genuine love, without any risk of misunderstanding. And no matter how painful the treatment is, the mental burden they must manage is more reasonable. They are not advised to act as if they don’t care while the lion tears them apart.

 

I’m not mocking this treatment. Exposure and Response Prevention therapy (ERP) works. I applied this treatment during six-month periods of torment 20 years apart to the same obsession, and I crawled out of the pit to live a terrible or wonderful life, like anyone else, for the rest of my life, completely forgetting about OCD. It was terrifying to have the monster return 20 years later because I had forgotten it completely. The problem here is that, philosophically speaking, advising someone screaming in fear of the lion in the room to not scream while the lion devours them and to be "an observer from the outside" shouldn’t be the pinnacle of medical treatment. Politicians, media professionals, health organizations, pharmaceutical companies, doctors, and anyone responsible for the policies and practices related to this issue should do better. We shouldn’t see absurd information about OCD on TV, in newspapers, and online. OCD patients shouldn’t have to fight for the understanding and support they deserve. If OCD weren’t seen as a silly symmetry problem and random people on the street didn’t believe they had a bit of OCD because they look in the mirror twice before leaving the house, things might be different. Unfortunately, these people have no idea what they’re talking about. You might prefer to be a starving child whose father died in the trenches of World War II, to have cancer, or to be in a concentration camp instead of having OCD. I’m not joking.

 

It's not unreasonable for a patient, especially one who is struggling with even the smallest decisions and living through what is undoubtedly the worst period of their life, to expect doctors to be specialized in a particular field. For instance, some doctors, despite not being malicious, might inadvertently enable your illness to take root by merely comforting you for years. Others might search for the causes of your obsessions in your childhood, or they might spend years debating what your obsessions say about you. Some doctors might believe that the exposure therapy is beneficial only for anxiety and has otherwise no impact at all. All of these professionals could hold the same title and graduate from similar schools.

 

I know people who, while living with OCD, think they’re receiving the best treatment money can buy, yet they continue to receive treatment for 30 years. Yes, I was lucky because I managed to become my own doctor. I nearly died, but twice, twenty years apart, I came back from hell to life. This situation reminds me of a diary entry from a book by the famous historian Saul Friedländer. The diary's author, whose name I can't recall now (likely Viktor Klemperer), describes a scene at a social event in Nazi Germany like a dance or a party. During the event, some people are suddenly taken away to be killed, while the rest carry on with the festivities as if nothing has happened. Yes, that’s exactly how my OCD feels in my mind.