Mom living with OCD - My Story
I was formerly diagnosed with OCD this year.
Before that I always thought I suffered from anxiety which my general GP had told me.
My symptoms for OCD are mental ones, I have had visible ones through the years but the main constant ones have always been mental and because of that it can be hard to diagnose especially when it’s not a well-known disorder.
I didn’t know anything about OCD besides what I’d seen on movies, like the constant hand washing and having to lock doors repeatedly etc, so because I didn’t know what OCD really was I never thought for a second that I’d have it.
What is OCD?
OCD is having an obsession, which it always a mental obsession, it is an obsession that if filled with doubt and fear and you literally can’t stop thinking about it, they’re intrusive thoughts that terrify you. You have absolutely no control over the obsessional thoughts, it’s like being a hamster stuck on a spinning wheel. Then come the compulsions, the compulsions are done to try and stop the obsessions or to try and counteract them.
Compulsions are something you HAVE to do, it’s done out of extreme fear to stop, undo or prevent what you’re thinking. It is not something you want to do but you really feel like it’s the only thing that will help. Its exhausting because you know that you’re doing it but for you it’s the only thing that will keep you safe or other people.
Sometimes compulsions become second nature, you’re so used to doing them you don’t even realize and then sometimes they can be extremely frustrating and time consuming.
Obsessions cause extreme anxiety, you’re in a constant state of dread, it can really effect you physically as well as mentally. Trying to stop an obsession doesn’t make it go away, it may give you a bit of relief when you’re doing a compulsion but it’s very short lived.
People with OCD are some of the kindest and caring humans there are, they’re more worried about harming other people than anything else and unfortunately that overtakes their lives. They do not trust or have confidence in themselves because it’s hard to separate yourself from the fact that we aren’t our thoughts, we have absolutely no control over them. If you have a brain disorder you really can’t control the nonsense our brains chuck out.
How OCD effect me
In my case my compulsions range from avoidance of my thoughts like counting continuously in my head so I don’t think or avoiding the things that trigger my obsessional thoughts like the box that scares me at work that says “alex killer”, I hate that box and refuse to look at it.
I check things, be it mental or visible by constantly googling what I’m thinking to reassure myself or by checking how I’m reacting to something. Or I’ll try and do something or think something to make my thoughts invalid.
I used to have many rituals as I was growing up to help me deal with my OCD. For instance I’d have to go out and wish on a star every night. It had to be the first star I saw and I’d have to wish for everyone to be safe. If I didn’t do it then I’d be convinced they weren’t going to be safe, as if the star and my wish had some sort of power. My friends thought I was quirky and used to laugh but they had absolutely no idea with the amount of distress and anxiety I’d feel if I didn’t do.
I used to make a funny noise in my throat when I was going to sleep that used to drive my friends crazy when we had sleepovers. The only reason I made that noise was because I was convinced I wasn’t breathing, so the noise made me feel “safe”. It was my way of checking. I’m very glad I got out of that one before I started dating someone seriously, it would have been very distressing to try and hide it.
Realizing that getting up all the time at night to make sure the cupboard was closed because if it was open I’d be scared something terrible was going to happen when I was a child was because of OCD were some of the things I thought were normal. There were so many things I did growing up that were clear signs of OCD and didn’t know.
I remember driving in a car and listening to the radio, the news was about a man who had raped a baby, a terrible story. I naturally thought, “who would do something like that” which I’d class as a very normal thought most people would have, but from there I had the intrusive thought “what happens if you did something like that”.
I then went on to engage with that thought. I would say “ of course I wouldn’t”, “that’s disgusting” etc but my OCD thought would just keep saying “but how do you know”, “what if”.
I was tormented by it, completely. It made me fearful of myself. Even though I KNEW it was something I’d never do the OCD "what ifs" just wouldn’t go away. I began to avoid my son and all other children just in case I was some sort of deviant person, I wouldn’t listen to the news, read or watch anything in case there was some sort of “sign” that validated my OCD voice. That was one of the hardest times of my life, it was unbearable, I was petrified.
One of the awful things about OCD is that it “attacks” the things you love the most, for some people that could be religion, your relationship and in my case being a mother.
The thing with OCD is that it never goes away, it’s there constantly but you can learn to manage it by understanding it. If I’m having a very bad episode it can take days sometimes weeks to get a handle on it and it completely impacts my day because it takes precedence over everything, I am literally stuck in a living hell that I can’t stop. And most of the time it’s a living hell people can’t see. I tend to isolate myself when I’m struggling too much. I prefer to be alone.
When I’m having a good day I’m able to catch the obsession before it starts spiraling.
From talking to fellow OCD sufferers in South Africa it seems the main OCD themes seem to surround topics like HIV (contamination OCD), Child safety and harm OCD, which would make sense when we’re constantly bombarded with those sort of topics constantly on a daily basis.
Some of the things about OCD that the general public aren’t aware of?
There are so many things the general public aren’t aware of when it comes to OCD, in-fact most people don’t know anything except for what they’ve seen on T.V
These are the two top things I’d like the general public to be aware of:
For many OCD sufferers, their OCD behaviors (compulsions) are thinking based, which means they cannot be seen at all,
Being a perfectionist, liking things in a certain order does not “make you OCD”. OCD is not something you want, the compulsions you do are not things you WANT to do, they are things you have to do out of extreme fear. You can’t BE OCD.
I have been around many people who have said “Im so OCD” when they’ve done something like straightened a picture on a wall. At times I want to correct them but then I realize that they’re just uneducated about the topic just as I was a year ago.
The tools I use to help me manage my OCD
This year I have learnt so much about how to manage my conditions and its been an absolute blessing. After years of floundering and trying to cope by myself I finally have tools that actually help me.
I have started meditating - I joined a weekly class to help me set up a regular practice. I know meditation isn’t for everyone but I feel like it’s essential if you have OCD because it helps to separate youself from your thoughts.
I have started CBT – Cognitive Behavior Therapy, which has been such a helpful form of therapy for me. Previously I went to a psychologist who treated me for anxiety who didn’t seem to have a big understanding of OCD and she ended up making it a lot worse for me in the end. I have learnt that it’s best to go and see someone who has a good understanding of OCD because if they don’t you won’t get the help you need.
Medication - I do also take medication for my OCD and don’t plan to ever go off it. I tried and my OCD became completely uncontrollable. Being a single mom I really don’t want to be in that state again because parenting is extremely hard when I am. It’s important to know that being on medication does help but you can’t be reliant on just that, you need to learn tools to help you as well because the medication doesn’t just make your OCD disappear.
Mindfulness - One of the things I work on every day is mindfulness, I try to concentrate on what I’m doing, I really look around at the places I’m visiting, I try and engage completely in the conversations I’m having so I don’t go into a thought spiral. I’ve learnt to understand my thoughts more this way and now when I have an intrusive thought I’m getting better at being able to label it for what it is and then just let it be. I don’t try to stop the OCD thoughts, if you try and stop it, it ends up getting stuck and the spiral begins again. I generally say to myself “ that’s okay, it’s just an OCD thought”, It’s not easy at all, it’s a constant work in progress and it can be extremely difficult but in the end it’s worth it because things are slowly getting better.
Finally getting help and getting asessed is one of the best things I did, doing that made me feel “normal” and not so alone.
I’d spent my entire life not feeling normal and different, I honestly thought there was something drastically wrong with me, but now I know my brain is just wired differently and I’m not the only one.