Cecilia Paul talks about her research surrounding an unusual congenital disorder.
When I decided to write my novel, I chose to base it on a medical condition that I was not just familiar with but that I also had a lot of experience and knowledge on it. It made sense and also gave me the confidence to write with conviction because I could draw inspiration from factual events and experiences and, it also helped because I was passionate about the subject.
It is important to be clear on your intention/s for writing such a novel because this will help you to decide whether you write it as a fiction or a medical textbook. If your intention is to inform the affected person/s and the public, then writing it as a fiction will enable easier accessibility because they can access it via the media, internet or any other public arena.
Furthermore, modern technology has now afforded the public to become more knowledgeable on various medical conditions, which is advantageous but, you also need to be mindful of the downside of this because sometimes ‘a little knowledge can be dangerous’ without fully understanding something. Therefore, if your novel is a factual fiction, it needs to be believable but, more importantly, it needs to be authentic so using your first-hand knowledge and expertise in the medical condition you are writing about, will certainly help you to achieve this. Nevertheless, it is still important to do research to ensure that your information is also current and up-to-date.
Additionally, if your novel is inspired by factual events relating to a serious medical condition, you need to be very aware of the ethical and moral issues and, also know and adhere to the data protection and confidentiality rules – never use or reveal your character/s’ true identity or identities. Therefore, it is important to use pseudonyms so that even when the reader can identify with your protagonist and characters’ experiences, you have still protected their true identity/identities.
You also need to identify the main themes you wish the public to know so that they get what you are telling them. You can use your protagonist, like I did, to demonstrate and portray all the elements of your story using your experiences and inspiration from factual events so that it will feel real. You might wish to let the person with the condition know that her/his suffering is not uncommon and, inform that person about the available and appropriate treatment and support to further help and encourage them. Furthermore, you also want to engage the public so when they learn more about your serious condition, they may become more interested in your story and will want to know more about it. It might also encourage them to be more tolerant and empathetic towards the person/s when they can better understand the seriousness and affects of the condition.
The book title was crucial to me personally. Once I decided on it, my writing flowed. It really helps if your title relates to the serious condition or any common traits of the condition because it is, in itself already telling you a story. Mine was Elizabeth Just 16 because the condition I was writing about is commonly diagnosed in girls at the age of sixteen. You might need to research your title too, in case there are already several of the same used but, still if you use a bit of imagination and tweak it a little, you can make it your own.
Nowadays, the media is very informative and explicit about various medical conditions so the public is quite used to hearing medical terminologies. Still be mindful not to use too many so it helps to remind yourself that you are writing a fiction and talking to the public and, not to your medical peers otherwise it will sound like some medical jargon and, you might lose some of your readers. Obviously, when you are writing about a serious condition, it is inevitable for the use of some appropriate medical terms but, it will help the public understand better if you have a translation equivalent in layman’s terms too.
Finally, when or before you have completed your novel, you need to research a publisher, who is really interested in your book and, who would then disseminate and give your novel the publicity it needs to get the appropriate readership.
Elizabeth Appleton is a sweet and easy-going adolescent. But as she turns sixteen, she discovers something so devastating about herself that her whole world is turned upside down. Elizabeth has been born without a womb or a vagina and is diagnosed with MRKH, an unusual congenital disorder that affects the female reproductive tract. Frightened and confused, Elizabeth must struggle to understand how she can still be a girl but no longer a ‘normal’ one. As she questions everyone and everything around her – her burgeoning sexuality, her gender, her hopes for the future – Elizabeth must fight against the shame and betrayal she feels if she is to ever become the woman she has always hoped to be.
Cecilia Paul is based in London and has worked for the NHS, in the field of gynaecology for over twenty years. She is now retired and has been inspired to write her first novel dealing with this little-known syndrome hoping to bring awareness and understanding into the public sphere.