I've been sharing my story for years and have worked alongside the media a lot during that time. I've learnt a lot! I've also been asked these two questions quite a bit over the past few years. I hope this helps answer them.
I've also attached the PowerPoint on this subject that I presented at the OCD Action Conference 2021 at the bottom of the page. Just in case you prefer to read something a little more visual.
Should I share my OCD story?
We all spend a lot of time encouraging each other to talk about our 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 within our community.
That being said, I recognise that it took me a very long time to even open up to my family about OCD, and then even longer to get medical help. It took years for me to be able to write anything about OCD and even longer to start sharing it. There is absolutely no pressure to share your story. You can help to spread awareness about OCD without ever mentioning your own story.
You can:
- help to share other peoples experiences of OCD (with permission of course!)
- volunteer your time to the OCD charities - they are always looking for extra support
- make a donation to the charities
- share what the charities put out on social media
- write to companies politely challenging the incorrect use of OCD on some of their products
- and loads more!
Things to decide before sharing your story:
- How do I feel when talking about it on social media? Or in my personal life? Does it upset me? Is it cathartic? How am I likely to feel after sharing it on a bigger scale?
- Am I okay with this still being online/available in ten years time? Twenty years time? Who will read it? What impact may that have on me, my life and my family?
- There is no way of controlling who sees your story once it's out there. Can you deal with that uncertainty?
- Are you prepared for your friends, family and work/school/university colleagues to read it?
If you do decide to share your story, you can always start off smaller and work your way up depending on how you feel. So for example I started with the blog which had a very small audience. I then wrote pieces for OCD specific newsletters and magazines. This then extended into general mental health magazines until the last jump into the general public. That last step was a huge leap of faith for me despite telling my story over and over!
Starting small, with a more familiar and understanding audience (e.g.the mental health community), should give you an idea of how you cope with talking about it and knowing it's out there once you've shared it. 😊
How can I deal with the Media?
Okay, you might think that you'll have to be the one to contact a journalist with your story. That's not necessarily the case - every opportunity I have had has come from people (either a journalist or a charity) approaching me.
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, so this is here to help you make up your mind about whether you'd like to take part or not.
I should start by saying it is considered best practice for journalists to approach the charities when looking for someone to share their experiences. The majority of OCD charities have media volunteers and by using these the journalist ensures they are interviewing someone whose well-being is being supported. This also helps to ensure that the media pieces are factually correct.
Journalists do not always do this. The majority of mine contacted me directly but I then asked the charities to support me and work alongside me.
Rather than make this a really long read, I think it might be easier to bullet point it.
So here we go!
- If you are contacted by a journalist, immediately bring in a charity to help you. Ashley Fulwood at OCD UK, Cara Gordon from OCD Action and Diana Wilson and Maria Bavetta from Maternal OCD have all been wonderful at supporting me for various media pieces. These guys with help to make sure you are supported emotionally, will make sure the journalist is respectful and will ensure that you know everything you need to know.
- REMEMBER YOU CAN WALK AWAY AT ANY TIME.
- Ask the journalist about their career, where they work, where they've previously worked. Ask them to show you their previous pieces - articles, etc. This will give you a good idea about how likely they are to treat you and your story well and with the respect it deserves. If you're not sure or can't tell, again turn to the charities who have a huge amount of experience in this area.
- Do not allow them to push you. Journalists are often pushy - some scandalously so. If they pressure you, it's a good sign of a lack of respect and/or greed - that's the point to walk away.
- Be very clear with yourself about what you do and don't want to share. When you have an initial, or even follow up, conversations with a journalist, it's easy to forget the boundaries you've set yourself. Write them down, keep them handy and refer to them throughout the conversation. If you are questioned on these areas, have a response ready so it doesn't throw you. A simple 'I'd prefer not to discuss that...", etc is all you need. You can also have the list here at hand to help you.
- Ask for COPY EDIT!!!!!!!!!!!! I want to give this a thousand '!'s'. Inform your journalist that they can only have your story if you get the copy edit and the assurance that edits will be made if you feel they need to be. This means they have to run the story by you and make the changes you suggest before it is published. GET THIS IN WRITING. It's your story - you control what goes out about you. Again if they don't like it, don't let them have your story.
- Don't feel bad about turning something down or walking away. I turned down BBC Women's Hour because they couldn't give me a pre-recorded radio slot. I understand that for them it's a logistical nightmare but I wasn't prepared to go on live radio to talk about the most terrifying parts of perinatal OCD without the chance to change bits if needed. I wasn't prepared to put myself under that much pressure.
I've also turned down radio interviews for BBC Radio Essex and BBC Radio London - both because of niggles I had about them - in the case of BBC Radio Essex I was completely wrong and they were brilliant, in the case of BBC Radio London I was spot on - they rushed it and produced something unhelpful and factually incorrect. Sometimes, it's a gut feeling you get and although we can't be certain that someone will represent our stories well, there are things we can do to try to encourage it.
- Check whether there are specialists/medical professionals working alongside the production team or contributing (or giving quotes) to the article. Who are these people? They should be there to ensure the correct representation of the condition and if it's a TV programme, the well-being of those taking part. This is a good reflection of the integrity of the programme/ article.
- If they are covering a few different OCD stories, ask about them. Make sure it's someone you want to be associated with (ie not someone who incorrectly believes they have OCD because they get JOY from keeping their nails perfectly painted.)
- What does the journalist want to come from this article? What are their specific interests? Is it an awareness piece? Are they willing to share stories of hope and recovery? Will they promote the fact that OCD is a manageable condition that responds well to treatment?
- What themes of OCD are they focusing on? If they only want to hear from people who have external compulsions (ones that can easily be caught on camera), they probably aren't all that concerned about educating the public. Sadly OCD is an easy condition to sensationalise so we need to make sure they will be respectful.
- In an ideal world journalists would ask if they can use your social media comments and posts. I am seeing this less and less at the minute and sadly, although not surprisingly, it seems to be tabloid journalists who are the biggest culprits. Consider whether or not you want your profile to be public. This is especially the case for anything that might draw criticism from the readers of those newspapers. This happened recently with people commenting on products that stigmatise and spread misconceptions about OCD. Various tabloids included personal social media comments and posts in online articles without permission, which then attracted trolls. Now this doesn't mean that you don't challenge what you think is wrong, it's just an additional thing that needs consideration.
In Summary
It’s so tempting to share our story and to take part in media pieces about OCD. The desire to squash the stigma and misconception surrounding the condition 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.
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, should we decide to share them, are shared responsibly. 😊
I hope this helps! Please remember there is no rush to share your story to the outside world. No pressure at all. It can wait. Unless of course you're putting off seeking medical help and in that case please contact the charities again for support here. They have loads of resources to help you!
Lots of love
Cat x
Further Reading
Click here to see some of the places I've shared my story.
Learn about the other ways to spread OCD awareness here.
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