Amy, 23. OCD
Name, age, occupation: Amy, 23, medical student
Mood today? A little sleep-deprived and hazy
Wine, coffee or green smoothie? Coffee
3 vices: Indecision, lack of punctuality, and an irrational hatred of milk
3 virtues: Compassion, perseverance (thanks, OCD), thoughtfulness
What’s the best thing anyone has ever said to you: ‘He’s yours’ – my mum, on Christmas morning a few years ago, when she woke me up with a tiny dachshund
If you weren’t a student what would you be? Probably studying nursing, or English
What’s in your Headcase?
OCD, with a side of depression and anxiety for good measure
When did you first notice things might not be quite….’right’?
I was around 10 at the time. I knew that the things I was doing had to be kept secret, so that was probably the first indicator that something wasn’t quite ‘normal’
What were the symptoms/what happened?
I started to become very analytical about everything I did on days that didn’t go well. I would see patterns everywhere. This led to developing strange and complex rules for myself; wearing certain colours, avoiding or eating certain foods on certain days of the week, getting up at the same precise time every day even if I had woken up much earlier. I worried that if I didn’t do these things, my parents would split up. It gradually became more extensive – the rituals became more complex and took up more and more time. For example, I had to perform compulsions to reinforce what I considered to be ‘good’ numbers and words, in an effort to neutralise the ‘bad’ ones – this meant having to constantly be on alert, since numbers and words are everywhere. Roads were tricky, because of all the number plates.
Though I’m not anymore, I was very religious as a child, a lot of it centered around religion – much to my frustration, it still does.
How did you feel?
I thought I was absolutely crazy! Even as a 10 year old, I knew it was something I shouldn’t tell anyone about.
Do you know why it started?
Not really. My OCD has changed over the years in accordance with whatever I fear most at the time. As a child it revolved around the fear that my parents would split up. And when that happened a few years later, without any conscious decision, it quietly switched to the fear that they wouldn’t get back together. After that, I had quite a few years where it was pretty dormant – I wasn’t bothered by it much from around 14 to 21. For the last few years, it’s been as strong as ever, revolving around the fear that something horrible will happen to family members or that they will die. As much as I know that it’s ridiculous to think that my weird rituals could possibly prevent this from happening, there’s a tiny part of me that asks ‘what if?’ And when the outcome is so frightening, even the tiniest chance is too big a chance to take.
Did you know what it was, or what to do?
Not at all. I thought OCD was just about handwashing. I remember coming across an article about it in a magazine my granny’s house a few years after it started and feeling such a rush of relief, to know that this was a ‘thing’ – that I wasn’t the only one who had these thoughts or did these things.
How long did you wait before telling anyone?
About a year – I was around 11. I spontaneously told my parents in the car on the way to the beach. They were having a heated argument, and I wanted to make them stop. That wasn’t the smoothest move; the timing was very wrong, and they didn’t take it well. They were embarrassed by it, but I think it was more that they just didn’t know what to do. They didn’t know that it was OCD, and to be fair, the compulsions and rituals I was telling them about were pretty bizarre. We haven’t talked about it since that day, and I made a more conscious effort to hide things from then on.
Who did you talk to?
I found university tough right from the start. About 3 years in, I was falling behind a lot. I’ve now repeated 3 years for mental health reasons, so it’s been far from smooth. I was anxious almost all the time and was too afraid of failure to even attempt my exams. I was advised to try the student counselling service, which I did, but I mostly just sat in awkward silence. I was too embarrassed to mention the OCD stuff – it just felt too ‘weird’. When things became worse a few months later I sought proper help for the first time. I was 21 by the time I first spoke to a doctor about what had been going on, which is unfortunately not unusual in the world of OCD. Apparently, the average person with OCD will wait 10 years before seeking professional help.
What help did you get?
The GP I saw during that very first appointment couldn’t have been nicer. She referred me for an assessment with the community mental health team, and started me on an anti-depressant. Things had got pretty complex by the time I sought help – it was a knot that had got bigger and harder to unravel, so progress has been slow.
What happened then?
Depression and anxiety were the more pressing issues at the time, and whilst I was referred for CBT, they felt that my mood was too low to engage with it effectively.
It’s been a bit of a cycle of different referrals since then – different doctors, a CPN (community psychiatric nurse) and quite a bit of trial and error with medication.
At the moment, I’m on a waiting list for OCD-specific CBT. As nice as it would be if things improved, I’m pretty nervous about starting this. OCD has been part of my life for so long that I don’t even have to think about some of the compulsions – I barely notice that I’m doing some of them. I’ve never been able to even slightly resist doing my compulsions, so the idea of not doing them feels very weird.
How are you now?
As ritually as ever! My general mental health has definitely improved a lot over the last year. Depression and anxiety levels fluctuate and at times they’re barely there at all, but the OCD is a constant presence. It takes up quite a lot of time and definitely interferes with my studies. I do both mental and physical compulsions or rituals – some are ones which have stuck since I first developed OCD as a child, and others are newer ones that have cropped up over the past year or two.
What was the moment you remember things changed for the better?
After over 10 years of going to great lengths to make sure that no-one would find out, about a year ago I decided to write a blog post about what had been going on, and about how volunteering had helped. When I clicked ‘share’ on Facebook, I was so nervous that I threw on some running clothes and went for a 2 hour run so that I wouldn’t be near my phone or laptop, and couldn’t give in to the temptation to delete the post. The response was very unexpected. Classmates that I had lost touch with, and even some that I had never spoken to before, got in touch to show their support or to say thank-you for talking about it. The kindness and understanding that other students have shown has helped a huge amount. As difficult as it was (and still is) to talk about openly, I started writing more regularly.
Who helped you the most?
I have the best housemates that I could hope for. We only moved in together last summer but we’re comfortable around each other and for the first time, when I’m with them, I don’t feel the need to hide my compulsions. They’re not afraid to joke about OCD with me, but they also know how to help when I’m genuinely struggling. It’s simple things – like watching Netflix together or playing board games in the evenings, but having their company has made things much easier to deal with.
What is the best piece of advice you were given?
If you’re sure that it’s what you want to do, don’t be afraid to take an unconventional route to graduating. It’s a big deal now, but in 15 or 20 years’ time, no-one will know that you repeated two or three years of university. It’s better to persevere for now than to drop out and wonder ‘what if?’
(That helped me decide to keep on trying. For an OCD person, ‘what if’ is a pretty hard question to ignore…)
What worked best for you?
Writing, and volunteering. At university, it was probably fairly obvious to a lot of my classmates that I had some sort of mental health problem. I was a serial repeater, for a start. And I barely ever spoke. So sharing the blog posts was a bit like acknowledging the elephant in the room. It hasn’t improved my OCD, but it has made it easier to cope with. People know what’s going on now, and because I’m open about it, it's a lot less awkward. People feel more comfortable approaching me, and in turn, I’ve gained a bit more confidence socially.
In a similar way, volunteering has helped me more than any medication ever could. For the past six years, I’ve volunteered for a student-led branch of the blood cancer charity, Anthony Nolan. I got involved to try and help others without ever expecting it to help me in return, but it’s been amazing. It’s provided an outlet, a distraction, and some much-needed hope at times when things became really difficult.
What you would say to anyone who is suffering similar things, or to yourself in that state?
You’re absolutely terrified of people discovering your secret – but people will surprise you. For the first time, they’ll understand. They’ll be glad that you told them. And when you do, you’ll be able to start to move forward. You will help some of them realise that they’re not on their own. And you’ll become less alone too. You’ll still be a bit crazy, let’s be honest, but you won’t be on your own with it all anymore.
What’s the biggest change in mental health you would like to see?
I’d like to see mental health related campaigns becoming less superficial. It’s brilliant to see and hear it being talked about so much at the moment, but I feel that it needs to be more hard-hitting. Telling someone to improve their diet or take up exercise when they’re struggling can only help to a certain extent. That advice is unlikely to deter a suicidal young man in the way that, for example, a hard-hitting talk or TV advert featuring parents bereaved by suicide might. We shouldn’t be so afraid to talk about the reality of mental illness.
If you could say anything to your mental health issue, what would it be?
So, I was just wondering if you could let me know how long you’re planning to stick around for? Are you going to let me become a doctor or not? I’d like to know whether or not it’s worth continuing with this degree – we’re almost six years in now. I know this is quite the committed relationship, but you’re a wee bit clingy - will you ever leave me alone enough to be able to graduate.
Amy's blog can be found here.