A Guide to Sharing Your Story

Storytelling is one of the most powerful ways to help raise awareness of rare medical conditions.

Stories can help so many people. People who need to know they aren’t going through it alone, people who can identify with what is going on and help speed up a diagnosis, people looking to raise funds and increase understanding of rare conditions that precious little is known about.

 Stories create a connection. They help to explain our world and they help others to make sense of their world. Let’s face it, we all like a good story! And we’d really like you to share your story.

 If you’ve thought about writing down and sharing your experience but aren’t sure where to start, the following 3-step plan might help:

Planning

A good planning stage sets up the foundation for the rest of the process.

Think about why you want to share your story. What is the main thing you want people to feel, think or do? Was it that you found it so hard to get a diagnosis? Was it that nobody seemed to listen to you? Was it that you found great support somewhere and want to let people know? There are many ‘angles’ you could take with your story. It might be that you want to tell the whole story, which could take some time, so perhaps consider telling it in stages.

Once you have your angle, think about the obstacles that were in your way. The obstacles are the ‘conflict’ and conflict is crucial for storytelling. It doesn’t mean physical conflict, though it sometimes might be, think more about the hurdles you had to jump over to get to the point you needed to be at.

 The final part of the planning stage is the ‘emotion’ of the journey. What did you feel? Emotion engages the reader and makes the story more compelling, more ‘real’.

 Remember: 

(or, what did you want, what stopped you, how did you feel)

Building

With the basics of your story written down at the planning stage, the building stage is the fleshing out of the details.

Think of particular incidents that will help bring your story to life. Was there a particularly difficult appointment, a reaction to a medication – these snippets and anecdotes help build the emotion and place the reader in the journey with you. They can be funny, or sad, or frustrating – the key thing is that they will be emotional.

 If you struggle to think of some, talk to family and friends – it could be that you’ve forgotten about ‘that incident’ and that speaking to a friend will bring it all back.

Writing

The final stage (well almost the final stage) is the writing.

The best tip here is to write as if you were telling someone the story. Keep it conversational and informal.

 Use plain English (if that is the language you are writing it in!). Use short sentences, this helps keep it punchy and quick and whisks the reader along the journey.

Most of all, be yourself. This is your story, it is very personal to you. Don’t think you have to write it the way people think you should write it. It is your experience and if you tell it in your ‘voice’, not only will be easier to write, the reader will engage more as they will get a sense of who you are – which builds the connection.

The Afterwards Bit

Once you’ve planned, built and written your story the best thing to do is sit back for a while.

Let it rest before looking back over it. Does it tell the story you wanted to tell? Are you happy with it? Once you’ve re-read it and tweaked it, perhaps give it to a friend or family member to read through.

 Finally, well almost finally, leave it to rest a little bit more. The experience of sharing your story might well bean emotional one. You will be re-living events and emotions that might well have been very tough at the time. You might be upset again. Writing your story can be a rewarding release and feel like closure, but it also might stir up emotions again. So let the story sit for a bit longer, make sure you feel ready to share it. Just because you’ve written it, doesn’t mean you have to share it. Are you ready to let the world see it? If not, do not worry, put it in a drawer and let it rest until you are ready.

If you are ready to share it, then you can send it to us – and if possible, with photos. Photos are another way of giving the story life and engaging the reader.

You’re Done

That’s it. You’ve written and submitted your story, and it will be used to help encourage and inspire others.

We could use that story in:

• Our newsletter
• Our e-newsletters
• Our website
• In fundraising applications
• Annual reports

The most important thing is that you own your story, we will ask you where we can use it and we will only use it in that way. If you feel it is time for us to stop using it, then let us know. You own your story and we wont use it without your permission.

What Next

If you are interested in telling your story, get in touch

Or, perhaps you would like to tell your story on film? We have recently used personal stories in the video presentation that Sally, our Growth Nurse Specialist, has been developing. Get in touch with us if you’d like to know more or want to film your experience.