After Hurtwood: Writer, Campaigner and Trail-blazer, Caitlin Dean
So here’s a new pleasure: a slow-burning career journey after Hurtwood that has included the co-writing of a text now termed ‘definitive,’ which has improved the knowledge and understanding of a debilitating medical condition. Particularly impressive is that author Caitlin Dean has unquestionably saved a great deal of individual suffering, and is now working towards co-ordinating support and possible treatments. Clearly a central figure and spokeswoman for the cause, spearheading research into Hyperemesis Gravidarum a truly incapacitating and even life-threatening condition in pregnancy, Caitlin has improved our understanding of what is so often dismissed as ‘natural’, or even psychosomatic, and identified as a variant on morning sickness.
Having seen first-hand what it means to suffer this condition – which is unusual but certainly not rare – I need little persuasion that she has materially improved the lives of many by raising the profile, deepening the debate and refusing to be dismissed by the more unenlightened elements of the world, including, sadly, some elements of the medical world. Royal watchers will know that the Duchess of Cambridge has struggled with this condition, and Caitlin has used this profile, alongside social media, blogging and clear and informative publication in her battle (and this is the only word) to increase understanding, support services and research, towards ways of dealing with it.
It is a real pleasure to catch up with Caitlin Dean who left us – as Caitlin Vernon – in 1999 and came, via the usual indecision over career choices and paths, to a nursing degree from Nottingham University and a wonderful nursing role down in Cornwall. What changed the straightforward trajectory of her career was being completely prostrated by pregnancy: not the simple discomfort or temporary inconvenience of nausea, but the complete disruption of anything approximating to normal life. For 9 long months. Caitlin did this three times. With little support or understanding beyond her immediate family, and feeling patronized and misunderstood even by members of the medical profession, but equally determined that a medical condition should not determine the size of her family, she turned to a charity, Pregnancy Sickness Support (PSS), becoming a trustee, and activist for a cause that was so close to her heart.
Needless to say, her practice nurse career had been devastated, but driven by her passionate determination to dispel the ignorance and misunderstanding surrounding the condition, to fight for other ‘spewing mummies’, she found an instant audience in a blog of the same name. Becoming a trustee of the charity and gathering confidence and gravitas as a voice for those silenced (literally) by nausea she began work on what has since become the definitive text on the subject. Working with Amanda Shortman, another sufferer and likewise involved in the charity, she set about dispelling ignorance, addressing the uncomfortable truths of being unable to hold down any kind of work, or care for other children, offering graphically simple tips on avoiding sensory triggers as well as surviving the very bodily damage of puking up to 50 times a day. The picture is a grim one but at last the real truths were being addressed. The book is a masterclass in clear speaking and commonsense practicality on one level; on another, it provides a checklist of how to be taken seriously, how to request appropriate treatment, including necessitous hospital spells for life-saving re-hydration. Much of this writing was ‘on the hoof’ travelling with her husband and three young children round the USA. Her style is fresh and clear, sympathetic but not patronizing.
Interestingly English was not one of her A levels at Hurtwood, and indeed dyslexia was one of the reasons why. Sociology, Media and Theatre formed her portfolio, but it was another pal at school that introduced her to the joys of reading. ‘The Catcher in the Rye’ gave her confidence with reading and words, an MSc from Plymouth consolidated her theoretical status, and currently she is at work on her PhD under the guidance of one of her ‘research idols from Amsterdam’.
Her ‘big thing,’ she tells me, is ‘networking’. The research connections made at global conferences are central, and she is rightly proud of the fact that she is now in a position to advise interested parties within the UK and indeed internationally, researching or working with this condition. She is on steering committees and at the heart of the conversation, and has become the spokesperson on radio or television whenever the debate is opened. Her most recent success was in May this year working with the BBC, where she managed to ban any use of the term ‘morning sickness’ other than to make clear that Hyperemesis Gravidarum is NOT morning sickness, but something altogether more terrible. Caitlin calls this ‘One of the greatest achievements’ of her career, alongside the book, of course, and a stunningly good article in the British Medical Journal. This is a real highlight, giving her not only an international platform of the highest order, but has also been instrumental in shaping international guidelines and conditions. It has a wide reach around the world, dictating better practice and is shaping a code of practice in terms of treatment paths. It also encompasses an awareness of the potential (and considerable) implications of this condition on mental health issues. She reminds me that for some women with this condition the suffering is too great and they have to end their attempts to increase their families. The international collaboration for Hyperemesis Gravidarum (ICHG) now works with experts from America, Australia, Africa – all over the world. The aim? Clearly sharing research, but also helping each other, benefitting from knowledge and suggestions, and moving those boundaries of knowledge and understanding. They are also all fighting regulatory bodies, some of which are still hampering advances in treatment.
All this from a dyslexic who has used language and communication to superb effect. Time to get back to the working day for us both. So: Hurtwood years? Memories? Lots, clearly, and not least a number of her closest friends who remain inspirational and supportive. In terms of advice to others she is clear; follow your own paths and go with the flow. For her, it became clear just what she had to do, and putting together her passionate concern about good health with her skills of communication and commitment, she has made a real difference for many. ‘Keep an open mind,’ she advises. ‘Be prepared to make sacrifices and don’t miss opportunities.’
Sound advice indeed from Caitlin. Thank you for taking the time to share such an interesting journey, and thank you for making a difference.