Yesterday I watched this UpWorthy piece, a story by Ash Beckham who, while taking her niece to meet the frozen princess character, was mistaken for her dad. In the split moment she was torn between keeping her mouth shut and enjoying the moment with her niece and speaking out as an advocate for the LGBT community and raising awareness about gender stereotyping. It was interesting because I find myself in a similar dilemma surprisingly often when it comes to raising awareness about HG. Should I just keep quite at this kids party my children are enjoying so much and not risk any kind of scene or discomfort... or should I politely but clearly set this ignorant woman straight on how her “morning sickness” was not the same as her poor friends symptoms and her friend is not just “making a fuss” and it's not “psychological” and perhaps she should show some compassion rather than gossiping about her while she to sick to speak. Realistically, no matter how gently or carefully you try to correct someone you're inevitably coming to cause them embarrassment and risk appearing confrontational.

At the end of Ash's story you hear how, while she was running through the dilemma she was facing between the two roles of Aunt and Advocate the woman who had made the mistake had realised on her own and as they went to leave mouthed a pained “I'm so sorry” to Ash and she realised she hadn't needed to choose between the roles and she could be both things at once. And it was at this point I remembered a story I wanted to share from the RCM Conference last month... and what I've learned from it...

My role at the two day event, representing Pregnancy Sickness Support, is to raise awareness of the importance of treating nausea and vomiting in pregnancy for women and Hyperemesis Gravidarum and to tell midwives about our support network and how they can refer women. It's a great event to be at as an opportunity to reach hundreds, perhaps thousands of midwives to promote our message. The days are long, exhibitors are there from 8am to nearly 6pm and it is exhausting talking to so many people, answering questions, discussing the condition in depth and so on. And then it's back to the hotel where, far from resting, the work continues as you network with fellow exhibitors from whom you can learn and you meet delegates interested in your work. And it's there that this story begins.

Having travelled to Telford I had set up the stand, found my hotel and checked in. The hotel was a very old building with big thick walls which, while pretty, meant that the wifi in the room was impossible so I headed to the bar area to have some food, facetime my kids and get some work done. As the evening went on the small bar began to fill and to make room for others I shifted from a sofa to a chair, which still allowed for laptop power, and offered the larger space to two women who had just come in. Being the grumpy, unsocial person I can, on occasion, be when I can't be bothered to talk I buried my head in my laptop and got a post live, promoted it on facebook and stuff like that. Unusually for me I wasn't particularly eavesdropping on the people around me until the work hyperemesis was heard, at which point my ears, of course, pricked up. And then my heart sank. The two midwives I had given the sofa to were discussing the impact the Duchess of Cambridge's diagnosis of hyperemesis has had. One of them said to the other “now everyone's got hyperemesis,“she's had it so I want it” they say, like it's fashionable”.

Now I could have jumped in at this point and set her straight, she was talking loudly in a public space and doing a significant disservice to her profession. But honestly, I was tired from travelling and setting up and I had two whole days of awareness raising ahead of me and frankly I knew it would have been inappropriate, confrontational and generally the wrong way to go about it. My face was flushed from anger and frustration, my head swimming with responses and my heart aching with sadness that there are midwives out there that think women with hyperemesis are putting it on to be like a royal. Approaching advocacy with emotions at their extremes is a bad idea.

So I sat back, messaged some HG friends with what I had just heard, made a note of the words for a future blog post (glad about that now) and reassured myself that the opportunity would arise to not just set them straight but to change the negative opinions of many more midwives. I reminded myself of the article I had coming out in the BJM that month and of all the other great things we are achieving with the Hyperemesis Improvement Movement.

Another 20 minutes or so passed and I went to get a drink from the bar. The bar tender asked what work I was in town for and as I was saying I was attending the conference the two midwives on the sofa overheard, as they were attending it too. As I returned to my seat they turned, welcomingly, to ask was I a delegate or an exhibitor and the opportunity presented itself. “I have a stand there, for Pregnancy Sickness Support. We support women with hyperemesis gravidarum” I said.

“Oh... right” said the second midwife with a look of utter horror behind her still smiling eyes as she tried to remember the exact words her colleague had said. “I didn't know there was a charity for that. Well... that's great.”

“Yes, we're very small and it takes a huge amount of work... I'm working this evening still, promoting on social media and so on, I've got a blog on the condition too which I've been working on tonight as I'll be selling my books there tomorrow”. I said... just to well and truly establish my authority on the subject.

“Oh gosh, you've been working all this time! So what does the charity do” asked the first... And I explained about the support network and how it helps women when they are utterly isolated and people don't believe they are suffering and how we provide women with information about treatments when they are faced with pseudo-science and old wives tales about morning sickness remedies. And I never once acknowledged what I had overheard, and nor did they but they said they would visit my stand the next day. And off I went to bed.

They didn't come to my stand the next day and I didn't see them at the hotel that evening. And I was sad. I figured that despite my non-accusatory conversation about what we do, they had perhaps felt defensive and that despite there being a charity for it most women were probably still just making a fuss, wanting to be like the Duchess.

And then, at the end of the second day, they came. They walked up to our stand and we talked. I talked about how there is stigma and misunderstanding about the condition and people who haven't had it think women with hyperemesis are just making a fuss and the midwife who had made the comment said this:

“Well I think you are right, there is a stigma and misunderstanding amongst midwives and I must admit that I'm guilty of not realising how awful it can be, the isolation and suffering. I haven't experienced it myself so I underestimated it, but I won't any more. Now I know about you I'll tell them about the support and the treatments.”

And then they bought a copy of the book and I signed if for them thanking them for being great midwives.

Her acknowledgement of the error of her ways meant so much to me. She could have just avoided our stand or stuck to her view. Neither of us had acknowledged that I had heard it, there was no need. She had realised as soon as she knew it was overheard by someone who had themselves suffered, just how wrong it was to say at all. I didn't need to point that out.

You see sometimes it's better not to directly point out the error of someone else's views or try to correct the thing they have said as people are likely to close their mind in defence if they feel attacked, which can lead to attack back. Sometimes it's better to just let them realise for themselves that there is another way to see things. Quietly letting them know there is a charity that supports women with the condition they are talking about, or there's this funny blog they might like to read, or passing them the book at an appropriately private moment. Allowing them to open their mind and encouraging them to think for themselves is far more likely to be effective and far less likely to lose you a friend or get you in an awkward situation. Most people don't mean to be mean... they just haven't thought about something from the other person's point of view.

We must be careful not to underestimate the ability of others to come to their own, improved, conclusions. It's often easy to jump up on our high horses when we feel wronged and want to advocate for our causes. Like the girl in Ash's story, there was no need to publicly berate her mistake, simply being who we are is quite often enough.

I'd love to hear about your experiences of raising awareness and changing peoples opinions of hyperemesis so please comment below if you've had a successful (or unsuccessful) experience like mine.

I'm in Telford tonight having set up the Pregnancy Sickness Support stand ready for the next two intense days at the Royal College of Midwives Annual Conference. I'll be speaking to hundreds of midwives and student midwives as they shuffle past our few feet of expensive floor space, which will make it worth every penny of the charity's hard raised money. I'll also have copies of Hyperemesis Gravidarum - The Definitive Guide available there and had amazing feedback today from a women whose GP was reluctant to prescribe until she showed him the book... she's now getting excellent care! AMAZING! So in advance of tomorrow I want to share this guest post by Tracy Morgan, because it demonstrates clearly why midwives knowing about this condition is so vital and why I'll be working my socks off for the next two days to raise as much awareness with this key group of professionals as I possibly can. 

Hyperemesis Gravidarum - My Story, by Tracy Morgan

The first time I ever heard the term Hyperemesis Gravidarum, my first son was a few months old. When I think back now, it is hard to imagine how I got through those long, torturous months with absolutely no idea of what was wrong with me. I have always been a Google queen – any symptoms and I am there at my computer seeking, and inevitably finding, the worst case scenario. So, only ten short years ago, how come there wasn’t any information to find? I actually don’t ever recall googling my symptoms. And really, why would I? The medical professions I dealt with never gave me any reason to think how I was feeling was anything more than morning sickness, and neither did anyone else. So it stands to reason that I would be left completely in the dark to the true nature of how bad I was feeling.

My first pregnancy was horrific. It robbed me of a time that should have been cherished, magical and incredibly special. Instead, it was miserable and downright unbearable. I started to feel sick at about five weeks pregnant, and by seven weeks, HG was in full throes. I couldn’t keep anything down, not even water, and the weight dropped off me. I rarely got out of bed, stopped showering, and at one point, I didn’t wash my hair for weeks on end - I just didn’t have the energy, and the smell of the shampoo was totally over-powering.

Surprisingly, other than those mentioned, I remember very few specifics about my first pregnancy. I just seems a blur. Considering my aversion to food – the look, smell and taste - I thought about it a lot. I remember getting terrible cravings for McDonald’s fries with tons of salt, and I would lie in bed just fantasising about them. I knew I wouldn’t have been able to eat them; in fact, I didn’t even really want to try to eat them, but the image of them replayed in my mind like a quirky home movie. I also slept a great deal. Although HG is exhausting, I used sleep as a way to escape; ten minutes unconscious was ten minutes nearer to the end of my pregnancy.

At my first midwife’s appointment at 10 weeks, I tried to explain how ill I felt, that I couldn’t keep anything down, not even water. Her response was unsympathetic, and she suggested I try to drink water with a teaspoon, instead. Wow! A teaspoon! Who would have thought? So simple. So utterly stupid. The water wouldn’t have stayed down even if I’d used a garden hose. This total lack of empathy or concern set a pattern for things to come - at no point during my pregnancy did any medical professional ever voice concern over my weight-loss; this is despite the fact that my chart showed a drop in weight at every appointment, and me weighing less in the delivery room (carry a 9lb baby), than I had right before getting pregnant. Nothing was ever mentioned about the sickness being anything other than a normal, expected side-effect of pregnancy.

As well as the terrible physical punishment my body sustained, HG also had a serious detrimental effect on my mental well-being. If this was normal, something many women went through without any problem, then I must be an over-dramatic, self-absorbed, bitter woman purposely trying to spoil what should have been the most beautiful time in my life. Yet, I knew this wasn’t true. Why would I want this special time to be ruined? The battle between knowing how ill I truly felt, and other people’s obvious opinions that I had no more than simple morning sickness, caused me to feel totally ostracised, misunderstood, isolated and incredibly lonely. My mum experienced what sounds like HG (of course undiagnosed), and although fairly sympathetic, she was thousands of miles away. My partner really tried his hardest to understand, and even though I am sure there were times when he thought I was over-reacting, or a pain in the bum; he never showed it. It was an incredibly stressful time for him, too – he worked long days, right through until the early hours of the morning, did all the housework, as well as taking care of a miserable and sick woman, all without moaning. I was lucky to have him; simply couldn’t have done it without him.

So, the realisation months after giving birth, that I’d had way more than just normal pregnancy symptoms, understandably brought about a multitude of overwhelming sensations. At first, I felt relief and vindication. This was proof that I hadn’t imagined it, or exaggerated how terrible I’d felt. Knowing that it was a medical condition, and not my fault, was like a weight off my shoulders. Then, came a deep, crushing sadness. A sense of why me? I felt robbed of my chance to blossom, to float around proud and happy, cherishing every precious second of my pregnancy. Lastly, and probably the strongest of the emotions, was anger. A huge sense of being let down, not only by the medical professionals supposedly there to support me, but the people around me. I wanted to scream in the face of every disbeliever: I TOLD YOU SO!

After my first son, I swore blind I would never get pregnant again, but two years later I found myself on the HG merry-go-round once more. This time, I was forewarned and forearmed. I was determined that I wouldn’t allow anybody to try to tell me this was just part and parcel of pregnancy; I was on the war-path! I went to my first midwife’s appointment at eight weeks pumped up, and ready to do battle. Thankfully, there was no need - I told her about my first pregnancy, and she immediately said hyperemesis gravidarum. Oh, the absolute relief! That sensation of being believed and understood is as powerful now, as it was then - it makes my eyes well up at the thought. With my midwife’s support, and medication, my second pregnancy was easier. It didn’t make HG go away, but knowing I had someone in my corner, fighting on my behalf, allowed me the strength to stand up to people who still failed to show me a shred of understanding. Because, the sad fact is, that even though the midwife prescribed me medication, even though HG was now in my medical notes, people around me still remained sceptical. I guess it is much easier to believe that a woman would willingly make herself so miserable, than to accept that she was actually telling the truth.

Having HG with a two year old in the house is indescribable. It actually helped in a bizarre kind of way, in that I had to get up to look after him; I couldn’t not feed him. But, trying to take care of a chattering small toddler when your head is pounding, and your stomach is so queasy, is hard. I would lie down close to him whenever I could. I would put his favourite DVD on and pray that he would watch it longer than five minutes (which was the best I could hope for with my energetic, easily-bored child). It became our little game - let’s see where we can lie down and have a cuddle. I was just as isolated this time around, in fact, perhaps more so. At least I’d only had myself to look after the first time, with my second pregnancy, I also had a two-year old. Nobody offered to look after him - I guess people either didn’t care, or didn’t think to offer.

Although medication stopped vomiting at around 10 weeks during my second pregnancy, I never stopped feeling sick. I couldn’t bear to smell food cooking, and I was constantly swallowing wads of gross mucous, which just increased the feeling of nausea. Every waking minute, I longed for the excruciatingly endless day to be over; the thought “I can’t take any more” reverberated around my mind constantly and unwaveringly.
HG is hard to describe to someone who has no idea what it is like. Saying you feel sick is like saying your arm hurts a little when, in reality, it has been ripped off at the elbow. It is so hard to explain how it makes you feel – it just affects every single part of your body and being, physically and mentally. The closest I could come up with, was to say it was like the worst hangover you could imagine, only rather than being cured by a lie-in and a quick fry up; it’s 24/7, and lasts for 40 incredibly LONG weeks.

The legacy of HG lives with me to this day, and probably always will. I still feel incredibly defensive and unfairly treated. I also believe that I suffered some kind of PTSD. How could you not go through being so poorly, and for so long, without support, and not suffer trauma? For the most part, I tuck it firmly in the back of my mind, but as of late; it is increasingly brought to the surface by media coverage, largely due to the Duchess of Cambridge’s pregnancy. I have sat with my hands scrunched together, experiencing almost physical pain, listening to ignorant people bemoan the fact that “they just had to get on with pregnancy, and it must be nice to be a royal”. The problem with HG is that it is similar (I am loathe to say similar, but can’t find another way to describe it) to morning sickness, which is of course a normal symptom of early pregnancy, and therefore, one that many can relate to. Because they can relate on that level, they automatically assume that HG is the same as the touch of morning sickness they had, which perpetuates misunderstanding, and leads to a lack of support and care.

Another thing that cropped up when I tried to explain about HG, was other women proudly exclaiming that they didn’t care how ill or uncomfortable they were during their pregnancy, that they only thing that mattered was that they had a healthy baby, and how grateful they were for that. None of these women had HG, I hasten to add. This feeling that HG sufferers are moaning, ungrateful women, who should shut up and thank their lucky stars, is ridiculous. It doesn’t work like that. Never did I ever forget how lucky I was to be pregnant (I suffered a miscarriage before my first son) and this feeling that we need to button our lip and get on with it, because otherwise we seem ungrateful, needs to change.

The sad fact is that, even now, there will be people reading this, rolling their eyes and sighing with frustration. They probably think I am exaggerating, that it couldn’t possibly have been that bad. Perhaps they feel that ten years on, I need to get over it. But that’s the thing - I doubt I ever will. I won’t ever forget it, and just can’t stop trying to justify how HG made me (and others) feel. Women with HG, and survivors of the condition, just want recognition, and empathy. That’s all.

Today I wear my HG badge with honour. I stand tall, proud of not only living through the nightmare that is HG, but surviving to tell the tale. Not everyone is as lucky as me, and I know that compared to some women, my HG was a walk in the park. I came out the other end with two amazing boys, who make all the heart-ache, pain, misery and sadness so very worth it.

It's Dyslexia Awareness Week this week and it got me thinking about my own journey with the condition, particularly in the wake of our incredibly successful book launch last month. I found some unlikely parallels with hyperemesis! What do dyslexia and hyperemesis have in common? Not a lot it may seem at first glance... one is a learning disability and the other is a pregnancy complication that causes severe and prolonged nausea and vomiting.

However both can be very misunderstood and stigmatised conditions. Both can rob you of your self esteem. Both can make you feel isolated from your peers. Both can cause long term suffering and misery if not properly helped and supported. And both can contribute to who you are and your personality, in a really positive way... if you let them. Both can make you stronger.

I was about 10 years old when I was diagnosed with dyslexia after a number of years of being told I was lazy and troublemaking. It was in the early 1990's and although many state schools at that point had good recognition and support for dyslexia, at the incredibly old fashioned private girls convent school I was subjected to, the condition was pretty much denied. Having had all of my self confidence systematically stripped from me between the ages of 5 and 9 by the nasty witches called “teachers” and the even nastier playground bullies, by the time I was diagnosed I was a nervous, slightly depressed child with zero self esteem and very few friends. So when I was subjected to the humiliation of having to walk across the silent classroom to follow the lady who had announce “Caitlin, it's time for your remedial class”, I didn't have a lot else to lose.

Luckily the remedial teacher was very nice and, despite having to teach me in what was basically a broom cupboard, she taught me valuable skills in learning techniques for spelling tricky words, which I still use to this day. My reading and writing improved too, although it would be many many years before I had as much as an ounce of self confidence. My year 6 teacher was also very nice, the only nice one I had during my junior school years.

But you know what? Now, some 25 years on I wouldn't switch that part of my life, despite that fact that I pretty much hated every moment of my schooling and put in huge effort to avoid going to school as much as possible... feigning illness, willing my leg to break, coming up with inventive new lies to get out of it. So why wouldn't I change it now? because it's part of my story and it's significantly contributed to who I am now... And I like who I am now!

If childhood is preparation for what lays ahead in adulthood then boy did dyslexia help to prepare me. Hyperemesis wasn't the first misunderstood condition I had suffered, it wasn't the first thing people didn't believe me on or think there were quick easy fixes for. I'd battled dyslexia and I'd won. Knowing I had not let dyslexia hold me back meant that I was more able to turn my journey with hyperemesis on it's head too and not let it hold me back.

My spelling is pretty poor still but I have spell check and people to proof read for me but I can read and I can write... and I can do it well. People read what I write and now people even pay to read what I write. It wasn't always like that, in my early teens my reading and writing age were that of a 7 year old and even during my university years my spelling was a major problem for me.

So what does dyslexia mean to me... it's was an obstacle that I didn't just overcome... I smashed it to pieces (admittedly I still have to step around the pieces now and then as editors come back with a hefty list of edits and typos). It represents a part of me which made me strong and determined and self reliant. And they set me in good stead to overcome hyperemesis, not just survive it but once out the other side I've used it to thrive. There is not much more satisfying and rewarding in life than making something positive out of something that initially seems negative.

Both Dyslexia and Hyperemesis are parts of my definition, they are badges I wear proudly. The cumulation of my determination to overcome both of these conditions was the publishing of the book Hyperemesis Gravidarum – The Definitive Guide (that's me, on the left, working on it late at night in a little cabin in the middle of know where by torchlight while the kids and husband slept around me). And boy am I proud of that achievement... even more so because not only am I now an author, I am a dyslexic author, and frankly... That's cool!!!

For more information about Dyslexia Awareness Week and for resources have a look at the British Dyslexia Association website.

To buy my book Hyperemesis Gravidarum - The Definitive Guide click on the Amazon link:

I got a call last week... I'd been nominated for the Tesco Mum of the Year award for my work raising awareness about hyperemesis gravidarum and developing support in the UK for the condition. Not only had I been nominated but I've made it to the shortlist of 26 from 3,500 nomination! And... not only had I been shortlisted but Tesco are donating £1,000 to Pregnancy Sickness Support on my behalf!

I actually can't believe it and burst into tears in the shop when I took the call (alas I wasn't in Tesco, but will probably make more effort to shop there now!). You see I don't really see what I do as amazing or recognition worthy. The women who deserve recognition are all the women battling hyperemesis; the women I speak to every day whose doctors are refusing them safe and effective medication due to ignorance and prejudice; the women who are struggling to enjoy their lives because they are so deeply traumatised by this horrendous condition; the women who don't have their babies because the support wasn't there; the women whose lives are now complicated by long term physical complications from HG.

It is for them that I do all of this. It is for them that I actually don't consider myself a particularly good mum... I fob my kids off on friends and childcare so that I can do what I do and I comfort myself that in the future
they'll be proud, cos at the moment they really don't get why I work so much. I comfort myself that for Orla's generation of reproducers the experience of HG will not be a lonely, isolated nightmare of mute suffering... That's her on the left.

I've been covering the Pregnancy Sickness Support helpline a lot over the last couple of months since we returned from travelling, and I've had a huge increase in emails via the blog since the book came out. And it's impossible not to hear how much the support network we developed and this blog I write helps others, and they are my inspiration. They are my heroes. Ironically it has lost me a few friends along the way, but I guess they are necessary sacrifices when you're breaking down stigmas and misconceptions. My voice when I was pregnant was weak and feeble, as is the voice of the sick women I talk to who can't understand why they are unable to advocate for themselves with their doctors and bosses and even their family and friends. And I explain that I was the same, despite how I talk about it now, when I was where they are now I too could not speak, could not fight, could not defend myself. They feel relief and I reassure them that we are giving them a voice, slowly but surely the volume is growing and we will be heard.

I've been so busy lately trying to secure the future of the charity and the UK support network along with promoting the book, that I've struggled to blog regularly. So over the next couple of weeks I'm going to use this platform to give other HG sufferers a voice to tell their stories with guest posts. You'll notice common themes such as isolation and trauma and you'll see how depressingly similar so many stories are. But hopefully, through the stories you'll find support, encouragement and hope... hope that with our voices united and channelled effectively we can make a difference, together, as HG Sisters, survivors, mums of the decade. And in the next decade the stories will be different, sure there will still be nausea and vomiting the occasional ignorant comment... but the isolation and trauma will be reduced, because we, the women of now are speaking up and changing the world.

If you would like to submit your story for consideration please use the form on the contact me page.

I've recently had the pleasure of speaking with Caroline De Bie from the Pregnancy & Medicine Initiative based in Brussels about developing a collaborative relationship between our organisations and cooperating together on projects to further education and research. It's an exciting time for developments in the world of Hyperemesis Gravidarum as we pick up the pace of improving services and awareness. Having featured as a guest blogger on their site I asked Caroline to feature on mine in order to raise awareness about their campaign.

Treating pregnant women like any other patient

By: Caroline De Bie, The Synergist Programs Director, Pregnancy & Medicine Initiative

Most women, when pregnant, vow not to ingest (or be exposed to) anything that might harm the baby. Some of us even go as far as avoiding things deemed “safe” by our doctor, because “you never know.” And that is a choice we make and are comfortable with: we were given information, assessed the risk, and made a decision.

But what if you are in a situation where your own life or well-being could be compromised? What if there is no information on how the treatment could impact your baby? Or whether not getting the treatment could be harmful for you too?

Very often, women in that situation (and their doctors) have limited options: delay the treatment until the baby is born, get treatment and live with the risk or uncertainty (sometimes their entire life), or forego pregnancy altogether. But how does that decision come about and can there be another way? Today, the information available about medical treatment and its impact on pregnancy is limited, conflicting, and sometimes nonexistent. And future parents and their doctors are often left in the dark.

If you believe, like we do, that every pregnant woman has the right to make an informed decision, benefit from the progress of science, and have access to appropriate healthcare, I encourage you to support our campaign and ask others to do so too.

The only way to bring this issue to light is for parents and their doctors to speak out about their own experience, and make our voices heard. Join us in supporting pregnant women’s rights. Visit fromdarktolight.org, answer our poll, share your story, and support others.

About the Pregnancy & Medicine Initiative 

The Pregnancy & Medicine Initiative was started because we believe there is a serious gap in medical knowledge that deprives pregnant women and future parents of some important rights. Pregnant women should have the right to appropriate medical care when they need it. They should be given the information they need to make the choices they are comfortable with. And they, like any other patient, should be able to benefit from the progress of science.

It's taken two years of seriously hard work. Started by Amanda Shortman in 2012 and joined by me last year to drive it forward it's finally here, the first of it's kind in the UK... Hyperemesis Gravidarum – The Definitive Guide. And boy-o-boy are we about bursting with pride! Pre-orders of it on Amazon has shot it straight to #4 on their Pregnancy and Childbrith Best seller list.

It's got everything you need to survive the condition, hopefully with your mental and physical health in tact and a wonderful baby at the end! It's also got all the info midwives, nurses and doctors need to holistically treat women with hyperemesis gravidarum both effectively and compassionately. It's approach is pro-active and encouraging and we hope it will provide support and inspiration to anyone affected by HG whether personally or professionally.

Our hope is that this book will make the world of difference to women with this misunderstood and under appreciated condition, now and for generations to come.

You can buy it from all major book shops on the high street, such as Waterstones, and online, such as Amazon. Currently it's only available in paperback but the e-book version will be available in 3-4 weeks.

You can click below to buy Hyperemesis Gravidarum - The Definitive Guide on Amazon.co.uk or click here if you live in America for the .com version and don't forget to write a review for it (if you like it!) and tell everyone you know about it!

And here it is on Amazon's Best Seller list this morning:

It's the Pregnancy Sickness Support conference on 11^th October at the super cool Think Tank Science Museum in Birmingham. I'll be there, presenting on a range of topics and I'll have copies of our book which Amanda (who will also be there) and I can sign. And I want you there too...

Okay look, I know it's an effort when you have small children and weekends are precious and you need to sort stuff out for Monday or get chores on the house done while your husband is at home or you have a play date organised... But this is really important so stop making excuses!

If we are going to improve hyperemesis gravidarum care and treatment not just for our generation but for our daughters and granddaughters (who have a 35% chance of suffering as a virtue of being a survivor of HG) then we need to get moving. I speak to sufferers and advise women planning pregnancies on a daily basis so I know how far we have to go to get this condition recognised for what it is. I've got first hand experience of working with mainstream media who insist on calling HG “morning sickness”. And I witness the conversations on the various facebook groups where women want knowledge and research and better treatment. But I can't do it alone... I need support.

This year's conference is all about enabling families affected by hyperemesis to enact change in the world. We will be coving how to raise awareness, liaise with local and national media, support women who are going through it, building the HG community and how to use social media to promote the charity's key messages.

It will be a great day, it's easy to get to, it's only fifteen quid, which includes a delicious free lunch. You'll get to meet me and my PSS colleagues, ask questions and interact with the wider HG community. I appreciate that these sort of things can seem daunting, meeting new people and all that, but these are you comrades, your friends, your fellow survivors and you will come away feeling empowered, united, inspired.

I'm working so hard on all this, I have been for the last few years... and I need help... I need women and men affected by HG to stand up, take action, and help me. You may not know how to at the moment or may think you don't have the time, skills or experience to help, but that's exactly why you should come, to find out how you can make a difference for your daughters, nieces and granddaughters.

Please... come to the PSS 2014 Conference... I'll see you there.

For more details about the day click here or to go ahead and book you place click here.

NB. The conference isn't just for sufferers and volunteers, anyone with an interest in the condition and understanding it more, healthcare professionals, journalists and anyone else are all welcome to attend.

It's been quite a whirlwind the last couple of weeks with the news that the Duchess of Cambridge is suffering hyperemesis again and the associated media frenzy that came with it. I don't know if we're really
making head way or not to be honest. The news that she was unable to go to Malta was reported without even the “acute” or “extreme” bit in front of the “morning sickness” she was reported to have. Sometimes it really feels like I'm banging my head against a brick wall.

But on Friday I travelled to London again (it's becoming a weekly commute these days, which from Cornwall is quite a chore). This time though it was to attend the MAD Blog Awards Ceremony as a finalist in the Outstanding Contribution category. And to be there, among some seriously big players in the blogging world, made that brick wall feel a little more like foam. To be nominated and short listed, from over 6,500 blogs for such a prestigious award, made me realise that people are listening. That my words aren't falling on deaf ears, that I am making a difference by harping on and on about bloody HG and all it's revolting, depressing faculties.

I didn't think anyone there would have even heard of me and my little blog, yet some amazing bloggers had actually read my blog and even want to collaborate to increase the volume of our collective voices.

Equally, there were bloggers there who had never heard of me or the condition “oh like bad morning sickness”... and so presented opportunities for awareness raising and education. Never one to pass up such opportunities I even managed to squeeze in a lecture to TV Dr Ranj about the need to distinguish between morning sickness and HG in the media and he had already seen my ITV appearance which pleased me greatly. Dr Ranj was hosting the awards, with great humour, ad libbing about his grizzly genitals and dropping V-bombs (the word vagina in a room dominated by vagina's)... As someone who talks pretty frankly about such matters most of the rudeness went straight over my head... he was reprimanded at one point for swearing and I had to ask my friend what swear word he used as I hadn't noticed: “He said s**t” she informed me, to which I replied “Oh, well s**t's not really a swear word, not like f**k or c**t”, resulting in her drink spraying across the table and out of her nose.

Anyway, I digress...

I didn't actually win the award, with the likes of Team Honk, Edspire, Gammon and Chips and other incredible blogging super-women, my half hearted blog about HG didn't stand a chance but all in my category were recognised as winners and I felt pound not just for myself but for the whole HG community that I was up there with the artisan's of this modern art.

On top of that I looked totally hot and was dripping with precious jewels lent to me by a school friend who now deals in antique jewellery on Bond Street. The food was yummy and the wine flowed generously resulting in an overall fun evening, followed by a deliciously child-free sleep and no alarm in the morning. (Note, there is life after HG!)

But you know the best bit about the bash? The inspiration... I'm upping my game... you just watch! I'm going to blog my little heart out over the next year. And should the Duchess of Cambridge go for a third baby one day, they won't be calling it morning sickness and talking about ginger – they'll call it by it's name, or at least it's initials. It's really not that hard, Hyperemesis Gravidarum or HG for short.

And don't forget, Amanda and my book, Hyperemesis Gravidarum – The Definitive Guide, will be out in just a couple more weeks... you can sign up for an alert when it's available here.

The Duchess of Cambridge is pregnant with her second child, and like the vast majority (80%) of women who have a history of hyperemesis gravidarum (pronounced hi-per-em-ee-sis gra-vi-dah-rum) she is suffering the condition again. My entire blog describes the misery of hyperemesis gravidarum and I wrote back in 2012 about how this might be for the Duchess so I won't rehash all that here.

What I would like to address is the appalling way the media are discussing the condition... Acute Morning Sickness! Or in fact during this morning's BBC Birmingham's radio interview they didn't even bother with “Acute” they just said she was having time off duties for morning sickness... which I promptly corrected.

“But we can't pronounce it... hyper... hyper... hyper what?” I've have numerous journalists and presenters say to me. What so because you can't pronounce it you'll just say she has something else instead? Great, that's like saying “Oh we can't say encephalitis so we'll just say so and so has a bit of a headache”.

Why is “Acute Morning Sickness” so incorrect when describing hyperemesis gravidarum?

The term Acute implies that it's a short lived condition. Hyperemesis is not short lived. It is incredibly rare to have improvement before 14 weeks (which is quite a long time when you're being sick constantly) and most women won't see any improvement before 20 week, that's 5 long months. But even for those who have improvement at 5 months, only 40% actually recover at that point. 60% are still having symptoms right up to delivery. And that doesn't even begin to address the long term physical and emotional problems women can experience.

So far from an Acute condition hyperemesis gravidarum is very much a prolonged and even chronic condition throughout pregnancy.

And then there is the “morning sickness” part of all this. Morning sickness is a cute, almost nostalgic term for a part of pregnancy which most women kind of look forward to... a bit of mild nausea and possibly the odd bout of vomiting for the first few weeks. Where the morning part comes from is a mystery to me as it can occur at any time of the day or night. However, it's a normal part of pregnancy and can be a sign of a healthy developing foetus (although that in itself isn't always true and it can increase the devastating impact for women who have felt sick for 8+ weeks only to discover at their scan that the baby is not viable).

So what should we call it? Well, the normal condition should be referred to as pregnancy sickness or nausea and vomiting of pregnancy because, like I say, it has nothing to do with the morning. And when it comes to the condition the Duchess has we should call it hyperemesis gravidarum – because that is what it is. If you really really don't want to call it that then you could at a push call it “very severe pregnancy sickness” or it's common abbreviation "HG", surely that's not hard to say?

But what harm does it do to misrepresent the Duchess's condition as Acute Morning Sickness?

The answer to that is A LOT! Belittling hyperemesis gravidarum to a normal, almost endearing, part of pregnancy does a lot of harm to those suffering what is in fact a serious and dangerous complication of pregnancy. It reduces the truth of the women's suffering, the lives ruined and the babies lost to the condition to a bit of fun, fixed by ginger!

When the media talk about morning sickness cures in the context of the Duchess of Cambridge's pregnancy it perpetuates the myths and old wives tales that prevent women receiving the treatment they need, it adds to the suffering and ultimately contributes to the loss of vast numbers of pregnancies every year.

So what can the media do to help?

Stop talking about morning sickness in relation to the Duchess of Cambridge because that is not what she has. Report on hyperemesis gravidarum because that is what she has. Stop getting doctors on TV who don't know about hyperemesis gravidarum to discuss morning sickness cures because you are causing harm.

It's appalling that registered doctors are seen to be speaking with authority about utter nonsense, like “ginger biscuits” (they are ginger flavoured... they don't actually contain any ginger!) or ginger tea. They've even stated that they try to avoid medication in early pregnancy and that every pregnancy is different, both in the context of hyperemesis gravidarum. Far from simply being untrue and non-evidenced base, both statements can cause significant harm to women with a history of hyperemesis who need to plan carefully for early medical intervention to manage the condition.

Hyperemesis gravidarum is an historically under recognised and marginalised condition for which women have had to fight at their most vulnerable and miserable time to get the treatment they need. That is despite the fact that it used to be the leading cause of death in early pregnancy and is still a massive cause of maternal morbidity and foetal loss.

It's time the media dropped the morning sickness nonsense and started to report on hyperemesis gravidarum, which the Duchess of Cambridge is suffering from. Let's address what does and doesn't help women suffering the condition, lets address the current poor state of care in the UK for HG and the fact that all women should be treated in their homes for it where possible, whether they are royal of not. Lets address the severity of this overlooked condition: speak to the women who nearly died from it (I know plenty of them); speak to the women who can't have a second child like the Duchess of Cambridge, because they don't have the medical or social support to face nine months of severe illness (I know plenty of them); speak to the women who lost their babies to this condition (I know plenty of them).

It's awful that Catherine is suffering, my heart aches for the awful situation she is going through and I hope she is getting the support and care she needs to survive this without the long term effects so many women experience. I really sincerely feel for her. However, this is an opportunity to improve the world for millions of normal women around the globe who also suffer this and don’t have access to proper care and treatment. Women who are faced with stigma and discrimination over the condition. Women who can't have more children because the condition could kill them.

Report it accurately and we could make the world a better place for all of these women. Report it badly, refer to it as morning sickness, perpetuate the myth that ginger cures it and you are hammering the nails in the coffins of the babies that have died from it and crushing any hope that women hold of their serious illness being recognised for what it is and helped.

So please British Media... journalists, presenters, celebrities, news desks, editors... it is NOT acute morning sickness... it is Hyperemesis Gravidarum.

For accurate information about hyperemesis gravidarum check out these links:

My FAQ section

My Best Bits 

Pregnancy Sickness Support - National charity supporting women with the condition

Hyperemesis Education and Research Foundation - American charity supporting women with the condition

For interviews, quotes or pictures please contact me.

There's been lots in the news this week about regular old Morning Sickness, as experienced by up to 80% of pregnant women. The knowledge that morning sickness can be a sign of a normally developing foetus is not new, but a study from Canada out this week claims that the babies of women with morning sickness may be more intelligent and have a lower risk of birth defects as well.

Now, I'm not going to get into a discussion about the funding of the research or about the fact that of the 20% of women who don't get morning sickness there is a higher incident of smoking which, probably because it reduces effective blood flow across the placenta, is known to reduce the sickness symptoms and there is likely a correlation between mothers that smoke and less intelligent babies, increased abnormalities and miscarriage... Mainly because I can't be bothered right now to dig out all the references to back up such a discussion... (Note to self... plan and pitch literature review on above theory to medical journals...). But I am going to write about why the difference between Morning Sickness (MS) and Hyperemesis Gravidarum (HG) matters and why studies like these do more harm than good.

The British, nay world, press seem intend on referring to the Duchess of Cambridge's admission to hospital in 2012 as “Acute Morning Sickness”. She in fact had Hyperemesis Gravidarum, a definition of which includes the need for IV hydration. Now I don't claim to have any idea of how much or little the Duchess suffered but the fact that she suffered at all indicates to me that she deserves sympathy, support and recognition of the condition. Her public appearances later in pregnancy imply that she was prehaps one of the luckier sufferers who responded well to treatment and recovered mid-pregnancy to go on and enjoy an otherwise normal experience. About 40% of hyperemesis sufferers follow the same pattern while 60
% suffer symptoms to a greater or lesser degree until the baby is born. Either way, she had HG.

The problem with referring to the Duchess of Cambridge's condition as acute morning sickness is that it undermines the condition she actually suffered with, which the study I refer to above clearly is NOT about.

Far from indicating a healthy and progressing pregnancy with extra intelligent babies, HG can lead to a host of complications and untreated is extremely dangerous for both mum and baby. Malnutrition, dehydration, increase risk of DVT, mental health complications, small for weight babies and placental abruption are all complications associated with HG. Furthermore, a huge amount of wanted babies die from HG, almost exclusively through neglectful medical care.

Why is medical care for HG so neglectful? Because it is lumped in with morning sickness and doctors use studies like these “oh morning sickness is a good sign” as an excuse not to treat this serious complication which is as far from morning sickness as a sprained ankle is from a broken femur!

Woman's Hour on BBC Radio 4 this morning did a piece on the study from Canada and during the show they, like every paper that's reported it too, mentioned that the Duchess of Cambridge had suffered extreme morning sickness; the implication being that this study was therefore relevant to her condition (and Prince George is likely a genius – no pressure lad!). Not once in the piece did they mention hyperemesis gravidarum or the dangers of the extreme end of the spectrum. The piece playing straight into the hands of the “oh it's just a bit of morning sickness... get on with it” camp. And will have been great for all those who walk around thinking “I had morning sickness, I just got on with it, I don't know why some women make such a fuss”... now they can add “it's good for the baby” to the list of ignorant, insensitive comments.

Across Britain today alone hundreds of women will present at their GP's or contact their midwives or head to A&E because their symptoms are miles beyond the parameters of morning sickness. I sincerely hope they are not met by medical staff who have read the papers or listened to Radio 4 and believe therefore that their hyperemesis is a good thing. I wonder how many women being kept alive by strong anti-emetics and IV fluids will get calls and texts from friends and relatives saying “Oh I heard on Radio 4 that your sickness is a good sign... your going to have a genius”. And in that moment their loneliness and isolation will increase ten fold as they try to explain yet again that they do not have morning sickness.

And it's not just the women on the extreme end of sickness that I feel sorry for on this one... Women who don't feel sick at all (and don't smoke) have now got more to worry about. Not only have they now got the added worry of defects and miscarriage but according to this study their babies are likely to be more stupid than the average person (because surely if up to 80% of women suffer morning sickness then their babies are “the norm” rather than above average??? Obviously I don't think that, I'm just demonstrating how easy it is to manipulate the message).

For goodness sake, can we all please stop having a go at pregnant women... Lets do some proper research into actual stuff, like how we can reduce the wanted pregnancies lost to HG (nearly 10% of pregnancies, which equates to 1,800 per year in Britain). Or how we can treat the symptoms more effectively and reduce the long term effects of the condition for both mum and baby. Or how we can prevent the severity of symptoms through effective pre-emptive planning.

I can appreciate the “news worthiness” of stories like these but for goodness sake, lets start studying and reporting stuff that actually matters!

Today I attended the HER Foundation 5k run (well, walk in our case) in Washington DC to raise funds and awareness over the pond and to further the international collaboration between the UK and USA charities.

My husband, children and I got to meet so many sufferers from all around the United States as women and their families travelled far and wide to attend. Over 300 people ran the race and it was exciting to see the public asking questions and hearing about hyperemesis gravidarum, sometimes for the first time.

Meeting Kimber for the first time was so exciting and we sat up sipping vino the night before the race setting the HG world to rights, comparing international theories and discussing the future of research and care internationally.

I was asked to give a speech at the race. Here is what I said:

“I am so honoured to be here representing not just Pregnancy Sickness Support but all of our UK volunteers and sufferers. Thank you so much for having me. Ann Marie and Jeremy have welcomed us into their home and we are truly grateful.

We, here today, we all know about hyperemesis and we all know about the suffering, misery and isolation the condition causes. But it's not very often we discuss all the great stuff that can come from being an HG Survivor... You see, I wouldn't be here with all you incredible, empowering women, partners and children if I hadn't suffered. I would never have met Ann Marie, Jeremy and Kimber... the people I have to thank for my children and my constant inspiration. It is thanks to hyperemesis that I've found strength and wisdom in suffering and been empowered to speak out for woman around the world whose own voices are muted by their unsupportive doctors, employers and relatives.

It's thanks to HG that I've learned to write and orate. I've even written a book – which I'm pretty sure defies every teacher I had in school who labelled me lazy when I was diagnosed dyslexic – It's thanks to HG that I've done that. Nothing else would have instilled in me such a passion and determination and nothing else would have affected me so much to know that's what I had to do.

And I would like to take a moment to tell you about how much all the hard work that the HER Foundation and PSS are putting in is paying off. The fruits of our labours are ripening.

The world is changing. The Hyperemesis Improvement Movement is making in roads now. Care is improving, awareness is growing, bad practice is becoming less acceptable, research is increasing. But most of all support for sufferers is growing. No longer do women have to battle all alone. Thanks to the volunteers of the HER Foundation, Beyond Morning Sickness and Pregnancy Sickness Support, when a women finds herself floored by HG she can now find us. She can contact a volunteer and she is no longer alone. It is thanks to the hard work of these charities that more and more women and their babies are surviving HG.

And there is a snowball effect happening with this movement. I for one, along with the HER Founders, am determined to keep the momentum going. My inspiration is right here, our daughters, my daughter, Orla. I am determined that if she chooses to have children, 20 or so years from now, she will NOT suffer the way we have. Regardless of a cure for HG, which may or may not be available by then, she will not suffer as much as I did because awareness, care and support will be better. I may never be able to cure hyperemesis gravidarum completely but I CAN cure the isolation, the lack of awareness that causes cruel comments, loss of employment and mental suffering. Through education I CAN CURE many of the worst symptoms of HG. I can't do it single handedly, but I don't need to... Through the international collaboration of the HER Foundation, PSS and Beyond Morning Sickness we are ALL working to cure these symptoms, and slowly but surely we are doing it. Hyperemesis is likely to always be around – but in our lifetimes the unnecessary suffering women experience will become extinct.”

You can watch the speech on you tube also:

Following on from my last post about fundraising I want to discuss how you can get involved with raising awareness about hyperemesis so that our daughters and granddaughters don't have to suffer the same injustices, ignorant comments and inhumane treatment that so many of our generation have.

I can't, however, let this post go by without mentioning the terribly sad loss of Peaches Geldof, who set an example as one of the only celebrities to have suffered hyperemesis gravidarum and to have spoken out publicly about her experience, which was so similar to all of ours despite being wealthy and famous. She experienced the same prejudices and poor treatment that so many of us have and went months without proper diagnosis. I'm so proud that the website I helped develop whilst suffering myself actually helped her during her first pregnancy and that she was able to print info for her healthcare providers to improve her treatment. She has set an example for others to speak out and she took time to promote Pregnancy Sickness Support through her social media feeds, giving us a much needed boost at the time. I had contact with her to discuss patronage for the charity and although unable to accept at the time she had already helped in her own way and gave a voice to hyperemesis sufferers across the country.

Now, moving on to what YOU can do to raise awareness and help with the Hyperemesis Improvement Movement...

First of all, volunteer. Either for Pregnancy Sickness Support in the UK and Ireland or the HER foundation in pretty much the rest of the world. They can offer guidance about raising awareness in your local area and resources for you to use. Hold a Big Brew event for International Hyperemesis Awareness Day, May 15^th and print out information for your guests.

By volunteering for the charity there may also be opportunities to get involved with conferences, research and interaction with local universities and midwifery colleges. Leaflets and posters are available from the charity to distribute at local hospitals and doctors surgeries.

In terms of media awareness, there is the option of talking to local papers and magazines... But BE CAREFUL. They want an angle and they aren't afraid to twist what you say pretty much any which way they want. A friend of mine told her local paper about her horrendous hyperemesis which resulted in a termination in an effort to raise awareness. They sold it onto the national tabloids and she was literally hounded for the next week having “aborted due to morning sickness”. She received hate mail from pro-lifers and her life was made a misery.

A good option if you are already a volunteer for PSS is to make sure you have the “happy to talk to media” button ticked in your profile on the website. A lot of magazines and papers get in touch with the charity to source case studies for articles and we are able to check the angle and quality of press before putting them in touch. In fact, I was contact just over a week ago about an opportunity to have hyperemesis featured in a Discovery Channel documentary. I have spoken at length to the producer and am confident this will be a great thing for the cause. They are looking for a woman currently suffering in the second trimester. Full details and how to get in touch are below.

Please note that this is completely unrelated to Spewing Mummy or my role as a Trustee for Pregnancy Sickness Support and I have no responsibility for the project and outcomes. I am simply sharing the advert to a relevant audience.

Are you expecting a baby? Is there such a thing as a 'straight forward' or 'easy' pregnancy? Do you think you're having – or you're likely to have- an exceptionally interesting or unusual pregnancy?

Few mums-to-be would say that pregnancy is easy or stress-free, but for some women, having a baby presents very unusual challenges.

Cineflix Productions have been commissioned by Discovery to make 6 x 60 minute episodes on the subject of pregnancy (our working title is “The Pregnancy Project”).

We're looking for mums-to-be from all over the world, who are juggling the usual excitement and anxiety of a typical pregnancy, with an unusual situation or condition.

If you're pregnant in an extraordinary situation (for example, you're acting as a surrogate for a family member or having a baby as an older mother), you're experiencing pregnancy with a pre-existing condition of your own (such as dwarfism or visual impairment) or if you have a condition brought on by your pregnancy (like extreme cravings, orhyperemesis gravidarum) - then we'd love to talk to you.

We're also looking for mums-to-be who might have previously been told they were unlikely to conceive due to unusual gynaecology.

From sharing the news with your loved ones, to medical appointments and baby showers – right up to the big day itself - we want to explore the realities – the highs and lows, the excitement and the inevitable anxieties that being an extraordinary pregnant mum brings, and help you share your pregnancy story.

If you'd be interested in an informal chat with a member of The Pregnancy Project production team, please email us on [email protected] 

or call 0203 179 0099– we'd love to talk to you.

(And of course – congratulations on your pregnancy!)

Click here for the article or read on for the story behind it...

A few months ago I was tweeted a link to a MIDIRS (a midwifery journal) article about hyperemesis. It was on the front page and was questioning whether hyperemesis was a “spiritual” condition. The article, which discussed one case study of a women whom personally I would not have considered an “HG” patient at all, claimed that as hyperemesis is neither psyhological nor biological (not sure how she claimed that as there is plenty of evidence of it's biological cause), it must therefore be “spiritual”. I was vexed.

I was still vexed when I happened to be at the Royal College of Midwives conference representing Pregnancy Sickness Support and I noticed that MIDIRS, along with their offensive front cover had a stall a few rows down from us. Duly Amanda (my colleague and co-author on the book) marched over and explained to the poor women representing the publication why said article was so offensive and frankly ridiculous.

The following Monday the editor was in touch asking me to write an article for them. A “patient perspective and how the midwife can help” angle was decided upon and I got writing. I submitted and was met with an incredible amount of edits. Honestly, it needed them... I had written from the soul and with far too much emotion and defensiveness (an inherent quality of many an HG survivor, I find). Edit I did and massively improved the article. The editor and I stood our ground over a couple of points I considered crucial and common ground was found. It also lead me to question my closeness to the subject and prompted my survey back in January.

I am exceedingly pleased with the results and hope that you, my readers, are too. My hope is that every midwife, nurse and doctor that comes into contact with a hyperemesis sufferer will read this and feel inspired to give her the best care possible... so please share the link, as much as you can and lets educate the world...

Click here to access the full text article. Thanks to Essentially MIDIRS for allowing me to share their published article. I look forward to writing for them again.

Between HER and the brilliant book by Ashli Foshee McCall, Beyond Morning SicknessI was empowered and enabled enough to go through my second pregnancy to have Patrick.

• Hyperemesis Gravidraum is NOT a normal part of pregnancy, it is a severe complication.
• Lets scrap “morning sickness” - PREGNANCY SICKNESS is on a spectrum.
• Women need to be treated appropriately, effectively and with kindness, compassion and dignity.
• Research is VITAL
• Women should not HAVE to terminate their wanted babies because of a lack of treatment and support.
  
  

  International HG Advocates outside the Whitehouse