*This is only a mini-post, written in response to something that I can see happening on social media at the moment. It's a short but important one.*
UPDATE: Almost a year on from this post, I've learnt a bit more about this through my own growing experiences with the media. I've added an updated section to the end of this post.
We all spend a lot of time encouraging each other to talk about our conditions, and to share experiences of living with OCD. We do this to stop people feeling alone, to give hope and to help with recovery. It makes me so proud to see the amazing conversations going on in our community.
It's come to my attention recently that there is one group of people, in particular, who we need to exercise vigilance over. And that's journalists. I’ve never really considered it before because I’ve never had a need to but I thought it was important to share so you have the information too. If you are part of an OCD group or post on social media at all about OCD there’s a chance you will be contacted also, lots of people have been, so this is here to help you make up your mind about whether you'd like to take part or not.
About a month ago I was contacted by a TV company asking if they could talk to me about my experiences of living with OCD. I agreed to an ‘off the record’ conversation, excited that they may be about to shatter the misconceptions of OCD so often represented in the media. The people I spoke to were very polite and seemed interested in showing the condition for what it was. I came away from that conversation feeling very hopeful… at first.
Luckily, I emailed a few people who I know have media experience and contacted OCD-UK. I spoke to them about whether they thought the programme was legitimate, and asked them for advice on what I should look out for in a TV company asking me to share my experiences.
I made my own decision not to take part based on these conversations, and what I’d experienced for myself through my dealings with the TV company.
These are some of the things we should consider, and questions we should ask, before deciding whether or not to share our stories:
When looking for people to take part in health-focused programmes like this one, it is considered ethical to do it through a relevant charity. OCD charities have specific people who talk to the media. You can easily volunteer to become one of these media advocates. It’s a role that, in part, is designed to stop every-day people living with the condition - and people who may be vulnerable - being approached.
Looking at past work will give you an indication of the type of programme or publication it’s likely to be. Will it be a true reflection of life with OCD, or will it be sensationalist nonsense, focused mainly on viewing figures? Looking at previous work and issues can give a clear indication of how they'll treat your story.
It’s so tempting to take part. The desire to squash the stigma and misconception surrounding OCD is huge, and there is very much a need for superbly produced documentaries and informative media pieces on the realities of living with OCD - but we do need to be careful.
If you are contacted by one of these companies, and you feel unsure about what to do, remember you can contact any OCD charity and seek advice. I believe the main ones in the UK are OCD-UK and OCDAction. They both offer support and advice regarding media appearances as well as anything else OCD related. If you know of any more please let me know and I'll add them to the list.
We are an amazing, tight-knit community of people living OCD, and we owe it to ourselves, and each other, to make sure that our stories are shared responsibly. 😊
This is a link to a piece by OCD-UK. It's written in response to people being privately messaged on social media by TV production teams. They know a lot more about this than me so it’s well worth a read.
If you’re not familiar with OCD-UK have a wander around the site while you’re there – there’s loads of helpful information on it!
UPDATE: I've recently taken part in two larger media pieces - one for Talk Radio one for Women's Health Magazine (they are both available in my blog and the Olivia Travels section of the website). I'll briefly list here how I dealt with each one to try to ensure they treated my story well.
Talk Radio - They contacted OCDUK CEO Ashley Fulwood and he asked me. Ashley has lots of experience of working out who is likely to report responsibly and although there's no guarantees I knew there'd be a better chance of him finding me a good media experience than I would.
I also spoke to the producer the day before and asked questions I'd thought about previously. My most important question was to make sure I wouldn't suddenly be cut off - I didn't want to make a big statement about my perinatal OCD symptoms if they cut me off straight after. Talking to the producer and having her describe the presenter put me at ease totally. It was only after that conversation that I agreed to do it.
Women's Health Magazine - Ooooo, this was a huge one and I did quite a lot of prep.
I received an email from a journalist asking me if I'd be interested in taking part in their Strong Mind series. She included examples of the campaign and examples of her previous writing - it was respectful, informative and non-sensationalist.
I recognised a fellow advocate in one of the articles and messaged her to ask how her experience with the magazine had been, the feedback was very good.
I worked out what I wanted to be included in my story, mainly harm based obsessions, internal compulsions and perinatal OCD. I messaged the journalist and told her I'd be willing to talk openly about those things as long as I could have a read though and a chance to make amendments before the article was published. I got an agreement to this in writing. I also made it very clear that I wanted it to show clearly the treatment options and how possible recovery was.
I spoke to both Olivia Bamber at OCD Action and Ashley Fulwood at OCDUK to ask advice and kept in touch with Olivia through the whole process.
I knew exactly what I wasn't willing to talk about - in this case it was anything to do with self-medicating and intrusive impulses - I thought those might distract people from the core part of my story.
I used my right to have things changed during the read back - I asked for things to be altered and they were.
I know this may seem like a lot of work, but as far as I know, that was one of the first times such an huge publication was going to cover a perinatal ocd story that included harm obsessions of a mother focussing on her child. It had to be done correctly. And thankfully it was.