The Reality Of Living With A Warped Mind - My OCD Story
If you’ve ever suffered with obsessive compulsive disorder and intrusive thoughts - chances are you’ve come across someone who has false diagnosed themselves with it. Not in a "google every symptom' health anxiety sort of way - someone who just has no real understanding of what the term obsessive compulsive disorder means. Somebody who has decided that because it has an acronym, it's kind of a fun word! A word to throw around to describe someone's silly, slightly annoying personality traits. You've probably met someone recently who is “SO OCD!!” because they like a clean house or are super organised. But that's where it ends for them. “Obsessive” is a personality trait - but not something that affects the way you function.
When you truly live with OCD (and I say “live” because it never leaves you, kind of like an uninvited, overpowering housemate, who doesn’t even pay rent) you understand that it isn’t a passing thought, emotion or feeling. It’s a constant intruder in your mind, that affects your day from the moment you wake up to the minute you close your eyes at night.
OCD something I’m so passionate about raising awareness about, as I’ve personally struggled with this disorder since I was 8 years old. Awareness of mental health issues seems to have be growing over the last few years, which is incredible - but awareness and support for people living with OCD still seems minimal. I think it’s due to so many parts of OCD disorders being seen as embarrassing and shameful for the sufferer, it really stops us from being able to say what’s going on in our heads, out loud.
I launched the Crazy Creative Cool platform over a year ago and this is the first time I’ve ever sat down to write about my own journey with obsessive compulsive disorder. I’ve tried before - and always found it too difficult to put into words, so I did what I do best when fear sets in - majorly procrastinated. Finding meaningless things to do and telling myself they needed to be done as a priority - anything to distract me from sitting down and trying to organise all of the thoughts in my mind. I’ve talked about my experience with anxiety and depression which wasn’t easy - but it was comforting to know how “normal” those feelings were, because a lot of people are more open about it these days.
This is what I want to see happen with OCD awareness. There’s something about OCD that makes it seem like more of a taboo subject than many other mental illnesses. For me, it’s because amongst everything else I have going on in my mind, this is the thing that makes me feel the most crazy. Not normal. Weird. A freak. This is the thing that I’m ashamed of, that I’ve not even told some of my close friends about. Why? Because with obsessive complusive disorder, we experience intrusive and mainly irrational thoughts. A lot of the time, we KNOW they are irrational. Despite this, they still terrify us. They still consume us, they still make us have to protect ourselves and the people we love. Explaining this to someone is embarrassing and their response can be devastating, depending on how much they know about how severe this disorder can be.
The stats don't lie - according to studies, it takes most sufferers on average 18 years to seek help for treatment. 18 years! This hit home for me, as from the age of 8 until I was 21, I stayed silent.
So here I am, attempting to use my voice to talk about something that in all honestly, I’ve still not fully overcome. I’ll start at the beginning.
My experience with OCD started around the age of 8 after a semi-traumatic event at school. Semi- traumatic in the sense that I wasn’t in immediate danger, but it deeply affected me and how I “safe” I saw the world around me. I started to develop this fear of breaking things and I was plagued with thoughts and guilt that I was going to upset or disappoint someone I loved. I would literally touch a door at someone’s house and go into an internal panic that I had scratched it and everyone was going to be angry at me. I know how insane this sounds to the majority of people, but OCD has a habit of creating real fear around things that are sound hilarious to others. Anyway, I’d build up the worry inside my mind until I broke down, distraught and inconsolable. Back then, there was so little mental health awareness around in general - especially for children - my family would actually laugh at me, not in a horrible way, but they just thought I was a natural worrier. They didn’t understand it and thought I was over sensitive or being a bit of a drama queen. This first stage of OCD lasted a couple of months and then developed and manifested into different things over the next ten years of my life. It was like my OCD was a TV series, it had an overall genre but the themes of the episodes would change over the years (just in case my brain got bored?!). In reality, I know it’s because OCD has a way of strengthening it’s power the longer you are silent. Like a monster, it changes form so that it can rear it’s ugly head when you least expect it. Throwing new thought patterns, phobias and compulsions at you without warning, to stop you from building up the mental armour or external support to conquer them.
Fast forward a few months and my obsessive compulsive thoughts had shifted form into fears that something bad was going to happen to someone I loved. It was the worst thing I could think of. I didn’t ever want to think about thinking about those kind of thoughts! But yet my mind was constantly riddled with horrific ones. The ironic thing about OCD is that it brings your worst fears to the surface, in the format that you WANT or are asking for them to happen. Many intrusive thoughts are not in the form of “I really don’t want -insert name- to die” they spring into your mind as “-insert name- IS going to die.” So, guess what our next thought usually is? "Well, YOU thought it, so now if it does happen, it’s YOUR fault. You caused it.” This is when the compulsions and actions come into play. Where obsessive and compulsive collide, overthrowing all logic to co-create a living nightmare for sufferers. For myself, when I had intrusive thoughts, I would have to perform an “action” in order to protect the person I’d just harmed with my thoughts. For example, I’d have to touch the wall a certain number of times, or say a sentence in my head for ten minutes. If I did it wrong I’d have to keep doing it again before I got it right. Before bed every night, I had a ritual to complete - recite the names of every person in the world that I cared about. If I missed anyone out, I’d have to start again, in case something horrible happened to them, because I did a bad job at protecting them with my thoughts.
Over the years, obsessive compulsive thoughts have manifested into phobias and other anxiety disorders. I developed severe health anxiety - still focused around intrusive thoughts. I become terrified and obsessed with illnesses and diseases I had seen on the news and wouldn’t sit on certain seats in public in case I caught them. At one point, I couldn’t allow myself to eat ice cream from the ice cream man (which was my favourite thing in the world) because I’d convinced myself that he had put drugs in it, which would ultimately kill me. As I got older, my health anxiety triggers ranged from using a new beauty product and panicking about a fatal reaction, or having an undiagnosed (usually terminal) illness. I’d constantly feel aches and pains in my body and each one would send me into a spiral of panic, which led me to googling symptoms… and it all goes downhill from there. The panic attacks would take over my life, the feelings of my throat closing up and not being able to take in any new air would make me too scared to go to sleep at night in case I never woke up again. I’d have panic attacks when out of the house and constantly think about how far the nearest hospital was, in case I had to be rushed there in an emergency and wouldn’t make it on time. If I ever hurt myself, I would worry for days that I had a blood clot and was going to die. I remember doing a gym class a few years ago and nearly knocking myself out with a weighted ball that I didn't realise would bounce (LOL) it’s almost hilarious to read looking back on, but I spent the following 5 days convinced they were my last on earth because I was sure was a brain haemorrhage!
Once, when working with one of my cousins, I had tight chest pains and was convinced I was going to have a heart attack. I had already planned out my “worst case scenario” in my head, figured out there was a pharmacy across the road so I let me cousin know the action plan. “I think I’m going to have a heart attack, if I do, please will you promise to call an ambulance straight away - then run over there to get some aspirin and make me chew it” (I’d read this tip online to boost chances of surviving from an attack). Obviously he looked at me like I had gone totally insane: 1 - of course someone would call an ambulance if something like that happened, it’s not as if they’d stand there and just watch…and 2 - there was absolutely nothing wrong with me and I was not about to have a heart attack. But my mind told me there was a high chance - so my body responded with the usual fight or flight symptoms of high anxiety and stress (racing heart, racing mind).
My intrusive thoughts even managed to turn going on holiday into a complete nightmare - I would have panic attacks every night because I didn’t know how far the nearest hospital was. Before a big family wedding in Thailand, I spent three weeks googling the top ways people die on holiday in Thailand, just in case. I came to the conclusion I may meet my end by being hit on the head by a falling coconut on the beach! You better believe I did not sit anywhere near any form of tree when I was away!
This sort of thing became a regular occurrence, some of the situations were so ridiculous looking back, but at the time they were so REAL. So full of FEAR. I was constantly full of fear. These things were real threats in my world and I literally never felt relaxed or able to fully enjoy life.
My health anxiety and intrusive thoughts around health or something happening to someone I loved had merged into some kind of super-powered-disorder that ruled my every waking hour. I even developed a toilet anxiety where I couldn’t go anywhere I hadn’t been before in case there wasn’t a toilet or in case there was only one toilet. I always had to have an escape plan which usually involved not eating or drinking anything while I was out of the house in case I needed a toilet and couldn’t find one. This added to the feelings of shame around my illness, making it even harder to ever imagine asking for help. I just couldn’t do normal things people my age were doing. Nights out were off the cards because I hated drinking alcohol (just made me feel even more out of control) couldn’t get in a taxi or get on public transport (I had to drive myself everywhere so I could be in control).
After I finished university, the rituals, safety behaviours and constant state of panic had gotten too much to bear. I started to isolate myself from my friends because I couldn’t do the things they were doing or go to the places they were going, out of fear that something bad would happen while we were outside of my safety zone (my house). But even at home, I was never panic-free. My mind was never relaxed. Just like when the OCD first developed, I would still constantly panic about something happening to someone I loved, would end up hysterical if someone was more than an hour late coming home, convinced the worst had happened. In those situations, my mind was like a studio and I was the director, I created horrific scenes that I never wanted to happen, in record times. In what seemed like seconds I had imagined the worst case scenarios and played them on a loop in my head until the person I was waiting for walked through the door or answered my phone calls. Oh, the phone calls. I can’t imagine what it feels like to a “normal” person to receive 72 missed calls when they are in a uni lecture, only to be told there was no emergency but I wanted to make sure he was alive. This is the kind of behaviour my boyfriend had to learn to endure!
Despite my family and a few of my close friends having an idea of what was going on, I never really talked to anyone about what was going on in my head and they only knew 10% of how bad it really was. After I finished university, the rituals, safety behaviours and constant state of panic had gotten too much to bear. I started to completely isolate myself from friends and even family.
I developed a skin picking disorder called dermatillomania - a form of self harm which involves the ritual of picking at your skin to generate feelings of relief from anxiety. The skin picking just gave me another excuse not to leave the house, because I felt so disgusted in myself.
My self esteem was so low, I couldn’t find the joy in anything (despite from the outside having a seemingly happy life and being very lucky). I was convinced this was all my life would ever be. I stopped feeling low and began to not feel anything. Just numb.
After reading an article online about depression I understood what the numbness meant. It was a strange feeling but something shifted in that moment. I’d spent years of feeling completely controlled and trapped by my own mind, but I suddenly had a stronger thought for once. I deserved to get help. I deserved to get better. I started therapy, but didn’t connect with my first or second therapist so I dropped out - and chickened out - of going back for 6 months. When I tried again, I finally found a therapist I connected with, started CBT and really started to feel hopeful for the future. We practiced a lot of exposure exercises, he would ask me to put myself in situations I feared the most and I would be in tears, convinced there was no way I could do it. Each session I came back to him with news of my accomplishments and although they were always small, they were big baby steps in battling my intrusive thoughts.
It took me so many years to get the courage to go and talk to someone because one of my irrational fears was that my therapist would know someone that knows me. I would obsess over the scenario that they would find out everything I said in a session, or my notes would be left out for other people to see. I couldn’t stand the thought of telling someone everything that went on in my mind. I even believed that a therapist would find my mind too weird, that I’d be too much of a mess to fix.
Even though I am still facing a lot of battles that my OCD created, counselling genuinely changed my life. It helped me to retrain my brain and negative thought patterns. It helped me to be aware of my thoughts and not let them define or control me. I still have days where I struggle a lot and it prevents me from doing some things I’d love to be able to do. If I had asked for help years earlier, I know I would be much more further ahead in my recovery journey.
The message I want to send to anyone who might be struggling, is to please remind yourself that OCD thrives on your silence. It forces you to feel guilt, shame and embarrassment about what’s going on in your mind, knowing that this will stop you from talking to anyone about it. This is how it controls and isolates you. I was constantly searching for someone else who was going through something similar, searching in desperation to find out that I wasn’t alone. I didn’t find anyone for years - so many of us feel isolated with obsessive compulsive disorder and the irony is just that. So many of us. Most of us are keeping it to ourselves as much as the next person is, so we never find anyone to relate to. OCD has taken so much from me in my life. It has tormented me and destroyed my self esteem.
The good news is that I now know that I hold the power in building it back up. I don’t need to wait until I’m “cured” or for someone to come and save me - I can start now and take small steps. And this is what I want you to do now, if you are suffering. Talk to someone. It could be me. It could be a friend, a family member - or a stranger on a mental health helpline. Help and support is out there but you have to believe you are worthy of reaching out for it. No matter how big or small your intrusive thoughts are, if you struggle to get control over them, if they are taking over your life - you deserve support. You deserve a moment of peace, in your mind.