Hi everyone, I’m doing something a little different today and talking about living with OCD for World Mental Health Day.
I don’t usually talk much about my mental health, but the older I get, the more I realise how important it is to raise awareness and speak up about personal experiences. Hopefully by communicating more, we can help more people who are struggling in silence.
I think it’s important to use days like today to spread awareness, and hope that it encourages others to speak up or seek help.
*UPDATE: OCD and the COVID19 pandemic. I have a post for the struggles with OCD and the pandemic/lockdown. Here I’m sharing more specific management techniques for these distressing times.*
My story with OCD
Previous to being diagnosed, I had been struggling for years and years and not understanding what was wrong with me. I would hate myself for being antisocial or unproductive, would get angry and upset and I wouldn’t be able to pinpoint exactly why. There were so many days where I just could not get out of bed, let alone the house.
In mid-2017, I was diagnosed with depression, anxiety and OCD. For me, OCD was the biggest struggle to overcome and the most difficult hurdle. Less than 6 months later I would be diagnosed with PTSD on top of everything else, but thats a story for another time.
My problems were mostly to do with contamination, and I struggled a lot with it. It wasn’t just that but also the paranoia which got to me. There were days where I wouldn’t be able to eat anything, I would get through around 15 – 30 different mugs and glasses a day because I was so scared of contamination. During this time, I shared a house with five others, and if someone moved something in the fridge or cupboards, I wouldn’t be able to eat it. Even if nothing was wrong and nothing happened, I would be convinced something awful was going to happen and I couldn’t eat.
Lunches at work were awful. I would anti-bac my desk and I would have to use disposable chopsticks. And I would go through around 5 chopsticks per meal because I would be worried about it. It was just such a pain and so awful – I would always have this sense of dread and it was the only thing I would be able to think about for the whole day.
There were occasions where I couldn’t leave the house. I wouldn’t socialise, I wouldn’t go out, I couldn’t do anything.
On top of everything, I couldn’t have anyone touch me or me touch anything. I would wash my hands and pour hot water on it, and my hands were constantly cracked and bleeding. Being miserable all the time made me exhausted and added to my depression and anxiety.
How I got help
I was initially referred to cognitive behavioural therapy (CBT), by talking through my issues and seeking help by understanding where they may arise from. After I started I was quickly referred back to my GP to be put on anti-depressants and continued CBT. I think it was the combination of those things that ultimately helped me.
But it wasn’t an easy journey, and I still struggle to this day. It took me months to be put on the full dose of SSRI’s I needed, and it took a long time. There are bad days, and there are good days. But another thing I can be grateful for are the people that I can speak to and rely on.
So what is OCD?
OCD stands for Obsessive Compulsive Disorder, and it is a mental health condition which can affect anyone, in which they have obsessive thoughts and compulsive behaviours. An obsession is something that repeatedly sticks in your mind and you can’t get rid of, which causes anxiety, unease, discomfort or disgust. A compulsion is a repetitive behaviour or mental act, which you feel like you have to carry out. If you don’t, you feel like something awful is going to happen, and so you have to carry it out to relieve the feelings brought on by the obsessive thoughts.
The biggest thing about OCD is that it has a MASSIVE impact on your life and how you live day-to-day. It becomes almost impossible to live like a ‘normal’ person. The disorder affects your relationships, makes you feel lonely, ashamed and anxious, and can stop people from eating, speaking or going outside. It becomes hard to concentrate or do anything, because the thoughts are completely over riding any other things you might be trying to do.
The illness isn’t the same for everyone, but follows a particular thought and behaviour pattern, which follows from a trigger.
NHS UK has summarised it well:
1. Obsession – where an unwanted, intrusive and often distressing thought or image (or urge) repeatedly enters your mind
2. Anxiety – negative interpretation over the obsession provokes a feeling of intense anxiety or distress
3. Compulsion – repetitive behaviours or mental acts that you feel driven to carry out because of the anxiety and distress caused by the obsession
4. Temporary relief – the compulsive behaviour temporarily relieves the anxiety, but the obsession and anxiety soon returns, causing the cycle to begin again. This can often cause avoidance of the trigger, or attempts to do so, even if it isn’t possible.
... and what OCD is NOT
It’s not about being tidy, it’s about having no control over your negative thoughts. It’s about being afraid not doing things a certain way will cause harm.
– Mind, UK
Common OCD misconceptions
So I’ve talked about what OCD is – but here is a run down of the most common misconceptions about OCD that I’ve faced. These are incredibly irritating to hear, but not only that, can be demeaning and put people off from seeking real help that they need.
1. You just hate germs
There are forms of OCD which stem from contamination. This is my primary struggle. But not all OCD is about germs and contamination. It’s not the same thing as being a germaphobe. The difference between them is that OCD is a MENTAL illness. There are many forms of OCD, and some people have absolutely no fears about germs whatsoever. It’s about the obsessions and the compulsions that create the disorder and triggers the fear, not the germs.
2. It's just about being super neat and tidy
Like with the germs, it’s nothing to do with the actual thing but the obsessive fearful thoughts. People with OCD don’t tend to care about being neat and tidy. It’s the fear and paranoia of contamination which provokes the compulsion to clean everything, usually to an extreme level. If not, the fear of something terrible happening is overwhelming and impossible to escape.
3. You just want everything to align and look nice
People say this to me all the time. “OH yeah I’m a little OCD I need all the beers to align in the fridge with the label facing forward.
How did OCD become so misrepresented?!
NO. This is NOT what OCD is. NOT EVEN A LITTLE BIT. No one is “a little OCD”. It’s not some cute little quirk you have that makes you unique. OCD is a mental illness which hundreds and thousands around the world are struggling in silence with because people don’t take it seriously and is often completely misunderstood.
4. Your home must be immaculate
Again, like the neat and tidy point, just because someone suffers from OCD doesn’t make them tidy and organised! It’s actually hard for people with OCD to be organised, because so much time is taken up by the obsessions and then dealing with the compulsions. I can’t even begin to describe how over powering the thoughts are, and how they seep into absolutely everything that I do.
5. Everyone's a little bit OCD
Again. Just NO. You either have it, or you don’t.
OCD affects around 10 – 12 people in every 1000 in the UK. Certain behaviours often associated with OCD can lead to people confusing it with the disorder, but trust me. People who have OCD don’t want it. The difference is that the compulsions OCD makes you have are about things you have no control over and have no choice but to carry out.
6. You can switch it on and off
Oh don’t we wish. Just like you can’t turn off having the flu, you can’t turn off OCD. Nobody chooses to live with these awful, intrusive thoughts, it’s terrifying. It’s something that is uncontrollable.
7. You're just acting irrationally and can 'snap out of it'
We know. It’s irrational and yet….
For me, this causes shame and embarrassment, and makes it harder for me to talk about. I know it’s stupid and irrational and doing these things seem so totally unreasonable. But I can’t help it.
8. If you're not neat and tidy you don't have OCD
The reverse of points 2 and 4, OCD doesn’t look like something you can see in someone’s home or office. You can’t necessarily see if someone is struggling with OCD, especially not with neat and tidy spaces.
9. It's easy to tell if someone has OCD
Nope nope nope.
Just because you don’t see something which you would class as “OCD symptoms” doesn’t mean they don’t have it. My colleagues and bosses had no idea I was struggling. Often people try their best to hide it, which adds to the fear of leaving the house or socialising.
10. There's no treatment for OCD
I’m ending this list on a bit of an upward note (I think!). There IS treatment for OCD. Trust me, I’ve had it. I can honestly say that it’s changed my life. The most common form of treatment is CBT (cognitive behavioural therapy) but medication can often be prescribed too. SSRI’s are commonly given to people struggling with severe OCD. I’ve been on SSRI’s now for over two years, and it’s been the best thing I’ve done.
What you can do
It is so important to get help if you think you might be suffering from OCD, and it is having a significant stress in your life. The two most common ways in which you can get help are by referring yourself to a psychological therapy service, or by visiting your GP.
You can learn more about it and seek help online too at some of these sites:
If you are worried about a loved one who might be struggling, try to talk to them about their concerns and suggest help.
Unfortunately, OCD isn’t likely to improve on its own, but there is treatment and support out there which can make a big difference to people who are in distress. It can give you back control of your life, enjoyment, and give you the chance to be just you again. I am so glad to have reached out and receive the help I did, and currently still receive.
If you are in urgent need of care, please, please, please either call NHS 111 (in the UK) or the Samaritans on 116 123 (UK). You’re not alone in this, and there is help out there for you.
I hope by sharing my experience here, it encourages others to speak out or for conversations to start.
Please share this with anyone who might need to see this, or just to raise awareness of one of the more misunderstood mental health disorders.
Thank you so much for reading and I let’s all try and make a difference on days like today!
See you in the next one,