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A Look Inside My World With OCD

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Editor's Note

If you struggle with obsessive-compulsive disorder (OCD), the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741. To find help, visit the International OCD Foundation’s website.

A seemingly “normal” day can flip in an instant. A single touch, thought or action can change everything. A loss of control if only for a moment can unravel your entire day, consumed by a singular feeling: fear. Many people experience fear, but in some people, fear isn’t just a worry — it consumes every thought and action. Fear doesn’t discriminate: age, race, sexuality or religion, we will all fear “true” fear at some point in our lives. This is what living with obsessive-compulsive disorder (OCD) is like.

OCD isn’t about mild discomfort or wishing something was different. It causes me intense discomfort and anxiety (obsessive thoughts) which causes me to complete an action to ease my feelings (compulsion). For example, if I touch something dirty, I become consumed by thoughts such as, “This is going to make me sick, the germs will contaminate me and I will make my family ill.” These are obsessions, and they are intensely distressing and difficult to control. With obsessions come compulsions: your immediate and unavoidable response. When this happens, I wash my hands a certain way and number of times or check objects in sequence, depending on what my thought was about. The compulsion helps to ease my anxiety, but rarely does it abate entirely.

Obsessions and compulsions can be almost anything, and they affect each person differently. So, what affects me may be entirely different to someone else struggling with OCD. One person’s mountain can be another’s molehill, but the struggle remains, even if their journey is different from mine. Living with and overcoming fear is something everyone can relate to in some way. Yet, what is your initial thought when you hear the term OCD? Many people believe OCD to be a way of saying you’re particular, fussy, a “clean freak” or overly tidy.

In reality, it is much worse than that. They are many misconceptions and assumptions surrounding anxiety and unless you have experienced it personally, it can be very difficult to understand and empathize with. Although there is support for people who struggle with OCD, there needs to be more support available for the families, too, as it can be detrimental to family life. I speak from experience; personally, although my family is supportive, it can be frustrating for them, and they make things worse without meaning to, so it is important to keep communication honest and open. I would say to anyone who knows somebody personally with OCD, if you are unsure of how to help, ask. They will probably know best what helps them.

So, what helps me?

1. Open communication.

This means being able to say if I am having a bad day, not just struggling in silence; what I am capable of changes daily.

2. Don’t assume, ask.

There is nothing more frustrating than someone just writing me off without asking. Instead of saying, “She can’t do this, she will freak out and have a panic attack,” ask. I may be able to face a situation head-on with support.

3. Have a back-up plan, be prepared.

If I know I am doing something that will trigger specific symptoms, I plan for it. Whether it be carrying alcohol gel and wipes, a list, a change of clothes or lots of research beforehand. This allows me to prepare for challenges I may face more effectively.

4. Celebrate your victories.

Some days, even the smallest task feels insurmountable. It is important to understand if putting on my shoes without a panic attack is all I can manage, then that is a victory. It is too easy to berate myself for what feels like a lack of ability.

5. Self-affirmation.

It is a constant cycle of forcing myself to counteract negative or intrusive thoughts. When these thoughts attack, thinking, “This won’t contaminate me, it’s not dirty,” I am not fooling myself and I’m allowing the thought to have power over me. Instead, I try thinking, “I know it is dirty, but it won’t make me ill, I can use antibacterial gel to kill the germs and wash my hands as soon as I can. I will be OK.” This is something I find the most difficult as when the panic starts to take over, it can be debilitating and it is so easy to focus on the negative thoughts. I try to utilize this on a daily basis, in the hope eventually it will help to ease a major panic attack.

6. Find an outlet.

I find it useful to immerse myself in an activity I enjoy as an outlet for my feelings. I enjoy scrapbooking, writing, painting and cake decorating, as it gives me something to focus on when I am feeling anxious.

These are techniques I find helpful, they may not work for everyone, but it is important to figure out what works best for you.

I know for some people with OCD, it can be difficult to open up and share what obsessions and compulsions are affecting you. There can be a heavy burden of guilt and shame, even confusion.

When I first had these thoughts of feeling contaminated and being fearful of something bad happening, I was incredibly confused and embarrassed. I was 15 years old and dealing with a lot of stress from school, as well as having a hard time with bullies who made my life hell. My self-esteem was through the floor and I was crying daily, unable to find a way out. I started feeling dirty, and I started to wash my hands more and more. It was the only thing that made me feel better.

Although, that didn’t last long. I became fearful, worrying about everything. I would sit under my desk at night putting my fingers in the plug sockets to make sure they were off, having to count to 30; if I didn’t, something bad would happen. Once everyone was asleep, I would go downstairs and check the doors and switches. I would stand in front of the front door unable to move away and going to sleep each night resulted in terror. I was afraid I would never wake up. To a 15-year-old girl, this was terrifying. When I finally found the courage to speak to my parents, they didn’t believe me. It took some time until they realized I was serious and then took me to the doctor’s. It was the doctor who told me I was exhibiting signs of OCD. I didn’t understand what it was, but I was at least glad there was a name for the madness I was feeling. At 16, I started seeing a psychologist. He, unfortunately, was not helpful. He told me it was stress-related and it would go away.

Over the years, my symptoms got progressively worse, I had constant panic attacks, depression and I went from washing 30 times a day to around 150 times a day. Work became near impossible, and working with children was my job. I love children and I wanted to continue in that career, but children are well-known for being unaware of hygiene at a young age, and sometimes I wished I had gone into a different profession. I wish I could say that now at 30, things are better.

For some people, getting a diagnosis can take years, and treatment options are limited. The main treatment option available is a combination of medication and cognitive behavioral therapy (CBT). Honestly, although studies say this is a proven effective form of treatment, I feel it depends massively on each person and the therapist you get. I have been through four cycles of CBT and I only found it effective in discovering what triggered my OCD and what the thought processes are behind it. I found a self-help book on OCD more effective than attending therapy as I found the experience very stressful.

While CBT is a commonly used therapy treatment in conjunction with medication, it does not work for some people, myself included. CBT basically looks at different aspects of our thinking patterns and how we can break the cycle of negative thoughts that cause our behaviors. Some of these aspects of CBT include challenging core beliefs, breathing techniques and relaxation, challenging negative thinking, behavior experiments, types of thinking and exposure and response prevention therapy (ERP). Arguably, exposure response prevention is the most important and anxiety-inducing part of CBT. As in essence, ERP is where you expose yourself to something you fear, such as if you have a contamination obsession, you could touch a bin, then you try not to complete your compulsion, like wash your hands for as long as possible or a set amount of time. Then, you could complete your compulsion. The idea is to repeat this many times, eventually for  longer periods of time so the anxiety is no longer debilitating. Sounds easy, right? I guarantee you it’s not. I still struggle with this after 15 years.

Therapy can be an incredibly uncomfortable experience because you are challenging your behaviors and it often causes a lot of extra anxiety. Typically, you can be referred for either group therapy or one-on-one therapy. I have tried both, I have actually just finished a group therapy course. Although personally, it was not effective for me, I do think it can be helpful for some. It is a good option if you want to meet other people who struggle with similar issues, and it is helpful to hear what techniques work for them. For this reason, I think it is a good starting point as OCD can be an incredibly lonely illness, and finding others who understand can be difficult.

One-on-one therapy is more intensive. You look more at the core beliefs of why OCD becomes an issue in the first place. How can you move forward if you don’t know why you feel this way in the first place? What is the trigger? You are also able to do behavior experiments and ERP. This is definitely helpful as when you do it on your own, it can be easy to give up because it is so distressing.

I feel it is important to raise awareness for people with OCD as it is not something many people talk about. There is often judgment, and the only way to break the stigma is for it to be spoken about. If you would like someone to speak to, I am happy to connect with others who struggle with anxiety and OCD. You can contact me through my blog, OCD and Me, or my Facebook under Stacey Frewin.

Getty image by Miomedia

Originally published: February 15, 2021
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