Pressing Matters

HEDS Up! edition 1

#SpooniePower

If only we had a piece of silver every time we heard 'Oh, I’ve never heard of that’ we’ d all be paying for specialist treatment...Bringing the condition to people’s attention, though, isn't hard - and we need mainstream support now more than ever.

Local newspapers, websites, television and radio stations are often on the look-out for unusual and interesting stories. It’s up to you whether you want your story to be based purely on personal experience, or tied into an EDS charity (or campaign, hint, hint!).

But before you begin, check out our tips on getting the important matter of Ehlers-Danlos/Hypermobility Spectrum Disorders (HSD) or an Invisible Illness in to the Press.

The internet may have loads of websites you’d like to approach, but don’t neglect the value of good old local rags. Not everyone spends loads of time online, and some still love sitting down and reading the paper. Countless stories are circulating in cyberspace, and unless they hit the bigger sites, they’ll get lost in the chaos.

Plan Of Attack

Don’t be nervous! Journalists are only humans doing a job. News doesn't happen, it’s made, and staff are usually happy to talk. It’s worth making the first contact by telephone, as your words may get lost in a busy inbox.

Before you call them, be prepared! Don’t be surprised if, after spilling your guts out, the journalist asks you to email them details – of what you've just said…It can be demoralising to fire yourself up to actually make the call only to be asked for an email you don’t really want to sit and write. Instead of putting it off for another day (that never comes), type up exactly what you want to get across before you initiate contact. Then, your message appears within minutes of hanging up, while your name is still fresh in the journo's mind. Bonus!

When it comes to paper publications, find out what day they go to print – and call the day after! You’re less likely to get the time you want to chat if you call during the storm while everyone is rushing to meet the deadline. For all other news media, just avoid Mondays…

Unless you already have the name of a specific writer, you’ll probably be calling a general number. You’ll be asked what you want to talk about and say something along the lines of ‘The most neglected medical condition in the history of modern medicine, that debilitates and kills’. These may be dramatic words, but they’re true. And remember what you’re dealing with – NEWS! When did you last see a tabloid lead with a tepid headline? Most people with Ehlers-Danlos have at least a few incredible stories to tell, and tag one on to the end of the above quote to personalise what you’re saying and link the story to you.

Don’t overwhelm EDS newbies with too much information in one go. If writer’s struggle to follow what you’re saying, they may switch off. As long as you’re prepped [see tip #1], you’ll be able to get the most important stuff across without swamping your listener. You can always suggest they ask you questions because you have so much to tell them, you don't know where to start! Also, at the end of your chat, direct them to an official charity’s website to learn more.

Journalists need time to research and consider a story and they often need permission from their Editor/Sub-Editor before they can start working on a piece, which means you have to be patient! If you haven’t heard anything in a week, give them another call in case they got distracted and forgot your story.

Let journalists know you’ll be contacting other news sources once you've finished with them...Everyone loves an exclusive or to break a story first, and if they think either are on their cards, they’ll be more likely to run your story before anyone else does.

Don’t say anything you might regret! This should be obvious, but in the heat of an intense introductory conversation or an emotional interview (once these tips help you get one) it can be easy to let our tongues slip. You can’t take back the written word – especially if it’s going to end up online. Save your rants for support groups’ Facebook pages.

When in touch with a newspaper, magazine, television or radio programme, ask if your story will be featured on their website. We can assume it will be, but bigger, breaking stories or even paid promotional pieces might mean your article wouldn’t make it without a little push. Some local newspapers’ websites aren’t managed or updated by the journalistic staff in the office, which is another reason to double-check.

Finally, if you do get some coverage, don't forget to show us on Facebook so we can share and celebrate your success with you!

If you still want to have a go at creating a few EDS waves but you’re not sure what angle to take, drop us a line and we’ll give you a hand.