Obsessive compulsive disorder - OCD treatment and therapy from NOCD
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Rumination, Just-Right, Perfectionism

One step forward and two steps back

By Sasha

I felt like I was falling apart on the inside, but nobody noticed. I cried myself to sleep at night, but nobody knew it. I was, and I’m still fighting a battle every day, but it’s invisible. But what is different now, is that I’ve learned to find my own way to live with OCD. And like Matt Haig said, “Words, just sometimes, can set you free.” And they did. In so many different ways. 

I was around 15 years old when OCD started. Back then, I had no idea what OCD was. I realized that I wasn’t doing well mentally, I was nervous all of the time, I started putting certain objects in their place and moving them back and forth until it felt “right” so this nervousness and anxiety would go away. 

I thought it was just because of stress. I had just changed schools because of bullying. A new school isn’t the easiest thing, especially at that age and for such a shy person like me. I had some struggles with my health. I had to go to doctors and hospitals all the time, which added even more stress and worries. I needed a safe place. I wanted more control.

And now, when I think back, I realize that OCD gave me this fake feeling of being in control. I just had to listen to this voice and do what OCD wanted me to do, and this nervous feeling calmed down. At least for a moment. 

At first, it was just about putting things in their right spot. But over time, OCD’s grip tightened, and it pulled me deeper and deeper into the darkness. Especially when I was around 17 and doing Abitur (in Germany, these are the last two years of high school when you prepare for the final exams). I had to check the doors, oven, the water tap over and over again, even though I was aware that I had checked and that the door was closed and everything was turned off. 

Over time OCD required more and more time and compulsions took over almost everything in life. I had to do every little everyday thing, many times until it felt right

It was incredibly exhausting and time-consuming. I didn’t tell anyone because I had no idea how to explain that. How was I supposed to explain why I had to put a cup down and pick it back up several times? You can tell someone that your head hurts, that your leg hurts, and that doesn‘t need any explanation. But how do you describe to someone that your soul hurts? Because you‘re being terrorized every day, but not by someone, by something only you can hear and feel. It‘s invisible, but it‘s there waiting for you every day and locking you off in a glass cage nobody else can see. And if I didn’t listen to it, the tension would rise to panic, and OCD convinced me that something bad would happen if I didn’t put the cup down again. 

Most of the time, I could hide my OCD in school and public places. But at home, especially when I was alone, it was the worst because the more comfortable I feel, whether it is when I’m alone or around people I trust, the harder it is to control it. My parents were the first ones to see me doing compulsions, and they were the first ones to ask what was wrong and why I was doing it. I said that I was fine and just stressed about school. But as OCD got worse, I couldn’t keep on lying anymore. I knew that I needed help. 

My mom encouraged me to seek help and talk to a professional. I wasn’t against it, so we tried to find a therapist. But it turned into a marathon through the city to all mental health specialists where we were always told that they are fully booked and didn’t accept new patients at the moment. Others offered waiting lists with appointments for the next year. At some point, we finally found a therapist who offered an appointment in six months. It was a relief. That was the best option and a few months was better than nothing. But right before the appointment with the therapist, my health wedged in between. I went to the hospital for a check-up. I had to do this every few months. But during the check-up, they discovered something, although it wasn’t the reason why I was actually there. A few days later, I had a big surgery. Everything ended up fine. But saying that this was, in addition to being in 11th grade preparing for the final exams, a stressful time would be the biggest understatement ever. 

Of course, OCD worsened. A lot. I couldn’t touch anything without having to do a compulsion. Whether it was moving objects to close them, opening them, putting something down so many times until it felt right, to putting clothes on and off. Because of the surgery and the ensuing summer break we had to postpone the appointment with the therapist until the Fall. 

OCD took up hours every day.

The first sessions were about getting to know each other and filling out forms. It took me a while until I felt comfortable enough to talk about OCD with her and open up. With each session, it became easier and it felt like a huge weight was lifted off my shoulders. I learned what OCD was and just being able to talk about it was a great help. It made it easier for me to talk to other people about it, like my family and close friends. To be honest not all of the reactions were kind and respectful. However the more I opened up and talked about it, the more I learned to not let other people’s reactions bring me down.

Then, my therapist told me about possible treatments. We wanted to try ERP (Exposure and Response Prevention) which is considered one of the most effective treatments for OCD. But it requires, at least from my experience, a ton of energy. Because I had to stop listening to OCD and its demands and not engage in compulsions even if I had the urge to do so, I started to feel worse. Sitting through the rising anxiety and panic was exhausting and because it made me even more anxious, I couldn’t find any time for school anymore.

I was in 12th grade which is the final and therefore most important year of school in Germany. We had final exams coming up in a few months and I couldn’t see how I could combine going through ERP and passing the exams at once. My therapist offered to try another option and to concentrate on calming me down. She showed me breathing techniques, we did meditation, and we continued talking therapy. And figured out what helped me the most at that time. 

This last year of school and the year after that were a rollercoaster of all kinds of emotions. After passing the exams I felt so relieved and free, I thought my mental health would get better from now on too. My therapy sessions ran out and I really did feel better. Especially while I was excited about prom. The happy feelings outweighed everything else. 

But it felt like every time I took a step forward, I took two steps back.

After prom, summer vacations, and travels, I fell into a pretty dark place mentally. I finally had time for myself, there were no distractions anymore and it made me realize that I was incredibly lost. I had no idea what I wanted to do with my life. OCD came in waves. There were times when I was doing fine, but every high was followed by another low. Every time something stressed me out, no matter how small the problem was, my OCD would worsen again.

I had to set my priorities. It took me over a year of learning to take care of my mental health, accepting OCD as a part of my life, finding ways to take breaks when I needed them, say “no” to things when I needed to slow down. I kept doing my breathing techniques when the compulsions stressed me out too much. I decided to do more things that made me feel good. 

I decided to finally take time for my mental health.

I started to read more, which helps me to calm down and reduce anxiety. I felt more and more comfortable talking about mental health in detail with others and opened up to a friend who I knew from school. After graduating from school we couldn’t meet that often anymore, but we still kept in touch and met up from time to time. She already knew that I struggled with my mental health, but only superficially. I never told her about it in detail. But this time, we met up and she asked me how I was doing. Without thinking too much, like I usually do, I told her everything I was afraid to say before. I was scared, and I didn’t know how she would react, but when I started talking, she didn’t interrupt me, judge me, or try to play it down as others did. She just listened. And that was one of the most relieving moments in my life. She is still one of the very few people who know that much about me and life with OCD and she has been a huge support since then. She was also the one who inspired me to write. 

We were talking a few months later over text message and she asked me some questions about OCD so she could understand it better. She dropped a comment at some point saying I should consider writing about it. I didn’t take it seriously at first, because I didn’t believe I was good enough for that anyway. Although I always liked writing for fun when I was younger. But she motivated me to try it and the more I thought about it, the more I liked this idea. 

Now, a year and a half later, I’m working on finishing my manuscript. I want to show through the perspective of my main character how it is to live with OCD. The ups and downs. The struggles. The darkness. But also the rare rays of sunshine and the possibility of getting better. Writing has turned out to be a kind of therapy for me. I didn’t believe that I would be able to write an entire story, with over 300 pages. But through OCD, and with the support of family and my best friend, I discovered my passion for writing. 

When OCD first started to creep into my life, I felt incredibly alone and misunderstood. I was sure that nobody would ever understand me. I hope this story and maybe someday the novel will help others struggling mentally to feel more understood and less alone. I want it to be a reminder for people that we should all be kinder to each other because nobody knows what someone else might be hiding behind their smile. I want other people to understand OCD better, that it isn’t a fun quirk like it’s often shown in TV shows. It’s exhausting and time-consuming and it can break you and lock you into its invisible cage. Healing requires a lot of patience. You will fall and you’re going to get back up again. You will take one step forward, only to take two steps back. And that’s okay. It’s a part of the whole healing journey. But there is a way out. You can get better. The storm will pass. And even though it will still rain from time to time, you can learn how to keep living your life. 

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