Last November (yes, it really has been that long) I spoke at the OCD-UK conference in Newcastle. Whilst I don’t really remember much of what I said (I seem to have erased it from my memory) and have not yet been brave enough to watch the video of it that’s sitting on my hard drive, I have got my slides and a couple of notes as to what I was going to say.
I’ll skip the introduction – if you read this then you know the background. After talking about my own experiences, I gave my ‘top tips’ for dealing with OCD. They are highly subjective and probably debatable, but here they are anyway –
1) Learn as much as you possibly can about OCD
To quote the old cliché, knowledge is power. However much support you have, you are the only person who can apply the treatment, and the more you know the better. It is an unfortunate fact that a lot of people have to fight for the right treatment for their OCD and you need to know what works and what doesn’t.
There is a lot of information out there – I would recommend the OCD-UK website as a great place to start, although there are also some brilliant books, particularly Break Free from OCD.
2) You will have bad days
This one sounds very negative, so stick with me. The fact is that you will have bad days – not because you have OCD, but because you are human. Don’t beat yourself up – just pick yourself up, dust yourself off and remember that tomorrow is another day.
People with OCD do tend to have a streak of perfectionism and this means that we tend to see things in black and white. The important thing to remember is that a bad day is just that – a bad day. It is not the start of a slippery slope, the beginning of the end or a sign of things to come – it’s just a bad day.
3) So make a back-up plan!
There will be things that trigger your OCD – whether it’s a lack of sleep, too much to drink, hormones or certain situations or events. Work out what they are and make sure that you have a plan in place to ensure that you can anticipate what you will do. If tiredness means that you are more susceptible to OCD and you have a weekend of partying ahead of you, take some time out to have an early night or a rest in the afternoon. It’s common sense really, but look after yourself and don’t be too harsh.
One of my triggers is travelling – I find it incredibly stressful and it inevitably sets off my OCD. Therefore I have a plan – I allow myself to pack the day before (rather than fretting about it for weeks), work out train times and connections in advance and make sure that there’s someone at the end of the phone in case I panic.
4) If at first you don’t succeed…
My first lot of CBT was not the magic wand that I wanted it to be. In fact, a few months after finishing it I was in a worse state than before. It took the third course of CBT to make a real difference – and I am so glad that I stuck at it.
Resilience is a really important concept. As I said before, you will have bad days, and what makes the difference is being able to recover from these and try again. I know it’s hard. I know it’s horrible. I know that sometimes it feels like the last thing you want to do, but it is worth it.
Find motivators – whether it’s working towards a huge goal like going back to work or university, or more manageable things like being able to go out for a drink with friends or, like Karen, going out for long walks without worrying about OCD.
5) Create a cheerleading team
I am incredibly lucky – I have a huge team of family and friends who I can turn to. CBT is hard work and having support is utterly invaluable. Sometimes it’s the big things – having someone sit with you as you work through a hard exposure, but sometimes it’s the small things – a text message asking if you’re okay or making you a cup of tea when you’ve had a hard day.
Apart from my family (who are just awesome), there are three or four people who I know that I can rely on for anything. They’ve had tearful phonecalls, me moaning over Skype, angsty text messages and far too many middle-of-the-night emails. They have seen me at my very worst and my very best and loved me throughout. So once again, if you are reading this (and I know that at least two of you do), thank you.
And a quick message to all those other family members and friends who love someone with OCD – thank you. We don’t always say it, and we don’t always remember to thank you, but your support means more than you can imagine.
6) Recovery is a marathon… not a sprint
One of the most important things to remember (and something that I used to find disheartening) is that CBT isn’t something that stops when the sessions with your therapist do. It is something that needs to be worked on continuously (although it does get easier) in order to stay on top of things. Someone once compared living with OCD to having a large garden. If you keep on top of the weeding, it only takes a small amount of work each day to keep things neat and tidy. If you let it get out of hand, then suddenly you’ve got a lot more work in front of you.
In a few days I hope to post a blog about how CBT has changed my life, so I’ll come back to this topic…
7) As your OCD improves, fill your life with other things
OCD, by definition, takes up a lot of time. As you start to get better, fill those gaps with things you enjoy – OCD likes nothing better than a vacuum. Get out – not only out of the house, but out of your comfort zone. If you’ve always wanted to join a choir, go ahead and do it! If you’ve thought about running, sign yourself up for a 5k race and get your trainers on!
8) Most importantly – stay hopeful
Before I had OCD (and more to the point, before I had CBT), I was a real pessimist. It is so, so important to keep a positive attitude to your recovery, no matter how hard it is. I know that sometimes you feel like giving up, like sometimes life feels like it’s not worth the effort, but it is.
Through my work with OCD-UK, I have met people who have suffered from really severe and chronic OCD and who have gone on (with the right treatment) to make an excellent recovery. I have met people who were so ill that they could no longer eat or wash who are now working. I have met enough people to know that you should never, ever give up.
So I’ll leave you on that note – never, ever give up.
Obsessively compulsively yours,