OCD Isn’t What You Think

Not enough people understand our struggle. One woman shares her story in hopes that it will help others.

Key Takeaways:
  • Kim is a mother whose had OCD since her late teens. Her symptoms spiked after the birth of her daughter.
  • Kim was affected by Maternal OCD, also known as Perinatal OCD. This is when women experience OCD during pregnancy or after giving birth.
  • Kim wants other to know that getting better is a process. You must be dedicated. Recognizing the disorder is not enough. Put time and energy into treatment.

I have OCD. I’m going to explain what that means, because not enough people understand. It means too many people suffer in silence. Like I did for over 10 years.

The media would have you believe that ‘you’re a little OCD’ if you’re over tidy, or that you have quirks about only eating red gummy bears and lining up your cutlery perfectly. Unless you believe your family will die if you don’t line up your knives and forks then no, no you do not have OCD.

OCD is irrational, it’s cruel and it’s so, so frightening.

Obsessions are intrusive and scary thoughts that you become haunted/obsessed by (i.e the thought of dying from cancer, images of murdering your spouse, abusing your child, blasphemous thoughts of God if you are religious). Most people get the odd bizarre and intrusive thought but if you have OCD you just can’t let them go. They trick you, mess with you and are seriously convincing.

Compulsions are anything that challenges the thoughts, rituals, things you must do in order to feel safe. Some sufferers may be terrified they’ll catch a chronic disease if they don’t wash their hands 72 times a day. They will look down at their raw scrubbed fingers and know rationally that their hands are clean but not truly believe it in their heart. They will doubt, doubt, doubt everything they know to be true. Others may be terrified they have murdered someone without realizing it and be constantly checking news articles to see if their fears are confirmed.

Disorder, well, that’s exactly what it is — a mental health disorder. It’s definitely not normal to feel this way and not conducive to a healthy full life. It must be viewed like any physical illness and be treated properly.

MY S**TTY OCD

The fact that I am in a position to talk about this with anyone, let alone publicly, blows my mind. I’ve spent so long hiding what I was going through. I hope it will help others open up if they recognize themselves in my story.

It started when I was about 19. I read something in a book about a young boy being abused (part of a plot line I wasn’t expecting) and became bombarded with intrusive thoughts. I became hyper sensitive to any news reports along that theme and my brain tormented me with the constant ‘what if’ — “If they are capable, I am capable.”

It got so bad and so upsetting that I remember being alone in my room one day and screaming “JUST STOP” over and over, whilst tears blurred my vision. It felt so shameful and I was terrified it meant I was an evil person capable of doing these things. I hunted desperately online for anyone else going through the same and found hundreds of forums about ‘intrusive thoughts’ but few people were talking about it without being anonymous.

My ‘Compulsions’ were very quiet, invisible behaviors that I became a master at hiding and didn’t always recognize myself. A big one was avoidance; I’ve had times where I was terrified of being too close to members of my family for fear of doing something awful to them. Another was being overtly aware of my hand placement, often sitting on my hands to stop them acting on perceived impulses. I would also argue internally for hours to the point of not being able to concentrate on much else and just generally be filled with a great deal of anxiety.

OCD STEALS WHAT IS DEAR TO YOU

At its most severe my OCD manifested itself as an irrational fear that I might harm my 3 month old daughter. She is now 11 months and I am on a life changing road to recovery (hence being able to talk about this openly!)

Any parent can tell you that the thought of threat to their child will make them feel sick to their stomach. The best way I can describe how my OCD developed when I had my daughter was living with this constant sick feeling 24/7. The moment I woke up with her lying in her basket next to me, every time I was alone with her, gave her a bath, changed her nappy.

Despite knowing I may be hit with my OCD (it peaks and troughs and comes in waves of ‘episodes’) when my daughter was born, my pregnancy was so good that I felt like I had a handle on it. It crept up on me when I was my most sleep deprived and vulnerable. I saw a headline about the abuse of a child on Facebook and that was it, a huge trigger knocked me into the worst OCD episode I’ve experienced. At first I just bawled my eyes out, it haunted me for days and then suddenly it twisted. It filled me with dread that I could be capable of harming her.

From then I became lost in a battle of compulsions. When my husband left the house I would spend hours crying curled in a ball on the sofa just reading about other people’s OCD experiences over and over, whilst I could only just about bring myself to do the basics to look after my daughter.

Then I had a series of days where I would leave the house with her straight after my husband did so I wouldn’t be alone with her and the perceived risk I felt towards her. I didn’t realize that all of these behaviors were just fueling the irrational belief and making me feel worse and worse.

KICKING OCD’S BUTT

After opening up to my husband, and a few close family and friends, I had waves of relief. They responded so compassionately and with such understanding that I couldn’t quite believe it. This was the beginning of my road to recovery.

After the initial relief I became overwhelmed with feelings of doubt. It genuinely got so bad I became convinced I should be locked up so my daughter could be safe. I then completely broke down. I called my health visitor in floods of tears and she said she would call the NHS crisis team and have them sent out to me. My husband came home from work to look after us both. We waited, and waited and no one came. I don’t want the focus of this to be about how under funded the NHS is but when you’re in the system you realize how true it is.

I ended up walking myself to our local A&E, numb with fear and spent the night there sobbing uncontrollably. Most of the staff were incredible and so supportive but one Psychiatric Nurse had clearly not come across OCD before and although was compassionate, mentioned social services and I completely clammed up and refused to speak to her. That moment was so damaging to me and I was petrified they would not let me see my daughter.

The next morning my husband and daughter came up to see me, just thinking about this moment is so heartbreaking. I love them both so much and it must have been difficult for my husband to see me like that. That was the lowest moment in this whole journey.

ON THE MEND

Now for the positive stuff. I’m getting better. I barely remember the horrific feelings.

I recognized that I wouldn’t get help from the NHS quickly, and even if I did, I knew it wouldn’t be specialist enough. Just saying you need ‘CBT’ (Cognitive Behavioral Therapy) is like saying you need surgery. It’s got to be the right kind of surgery, otherwise you’re treating the wrong thing and potentially making things far worse. Maternal/Perinatal OCD often gets misdiagnosed as Post Natal Depression and it really isn’t the same.

I ended up being officially diagnosed twice. Once on the NHS and once privately at The Priory. They were both the same  — Obsessive Compulsive  —  but I needed it. I needed to hear it from two Psychiatrists.

Diana Wilson from Maternal OCD (an OCD Charity) was a beacon of hope for me. I called her and she took time to comfort me (I was in a real state of panic) and share her own experience. She pointed me towards the most amazing CBT Therapist, and I had ten weeks of weekly therapy sessions with her. I was also prescribed Sertraline, an anti-depressant, and it helped lift me out of my OCD episode so I could concentrate on the skills I needed to get better.

I did get support from the NHS and met a truly lovely Psychiatric nurse, Debbie, through the process. I also did four weeks of Art Therapy which gave me time to breathe in between all the new mom pressures.

Getting better is a process, you have to be dedicated and be brave. There is so much to it. Here are a few things I’ve learned:

Recognizing is not enough. I did that. 7 years ago I went to a mental health clinic when I was living out in Canada. They said I had OCD, but it was like I wasn’t really listening. I felt that I’d done my part by acknowledging that there was something wrong. The moment I started to feel a bit better (it comes and goes in waves for me) I just carried on without truly addressing it.

Don’t push the thoughts away. In fact, let them in. Flood your mind with them. Accept them and let them be there. Eventually they will subside naturally.

Stop your compulsions. This sounds near impossible and it will fill you with fear and anxiety but you must stop or delay them as long as possible as they are fueling your fears and making you believe they are true.

I now feel like I am able to be the mom I want to be. A strong one. If I can make it through this, then I can take on anything life throws at me. My daughter is the most important part of my life and I want her to grow up understanding the importance of looking after her mental health. We now focus on keeping life simple and enjoying being together as a family. Even being back at work and dealing with teething and nights of little sleep feels like a doddle compared to battling my OCD.