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Journey into the world of hyperemesis gravidarum...
25Jun 15

What more do you want?

Last weekend I was at the Britmums conference and I attended a seminar entitled “Shouting Back: Women’s voices loud, proud & online”. In it we heard how easy it is [for celebrities like Katy Hill] to “make a difference” just by tweeting occasionally. At the end I had the opportunity to ask a question of the esteemed panel and I so I explained what I do and asked if they had any tips about keeping motivated for those of us trying to raise awareness day in and day out online  when it feels like our voices are just lost. I was helpfully informed by the aforementioned celeb that what I ought to do to raise awareness about hyperemesis gravidarum is “write a blog post about your experience of the condition and how it’s the thing Kate Middleton suffered with…. And then, like… tweet it!”, Easy!!!

Well, I left the seminar utterly demotivated, insulted and frankly enraged but as the rest of the conference went on and I attended other, better, seminars I felt my mojo return and by the end of the conference I was enthusiastic about returning home to further my awareness raising blog efforts and launch my kids book.

But then, on Tuesday, I launched my book. And it flopped… spectacularly.

It seems that I have utterly misjudged the HG community and the market for women suffering the condition. The market research I had done before launch had reassured me that there was demand and people would buy it… but they didn’t. On the day of launch I sold an incredible 3 books. Just 3!! Despite a strategic marketing effort, press releases, targeted mailing lists and direct access to  the bulk of the world’s HG online community.

And then the community turned on me… a post was deleted because it was deemed as “selling”. People questioned my motives and how much money was going to the charities. There were questions over why it wasn’t free for women with HG.

And I cried. And cried and cried… then I had a margarita cocktail and some prosecco and cried some more.

And then I decided I was done and would wave goodbye to the HG world.

But that was 2 days ago and I’ve calmed down a little since, although my eyes are still puffy from tears. I may still carry on blogging, or I may not… I haven’t decided.

I probably ought to cut my losses and get an actual job to maintain my sense of self-worth and earn some money. I might return to practice nursing or maybe look at the district. But I so wanted to generate a modest income from this blog in order to keep it going and to be able to keep funding all the work I do for hyperemesis improvement around the UK and the world – I don’t get paid remember! I invested heavily in producing two books which I genuinely thought women wanted and would help them.  But as I discovered…

The HG Community want me for free!

It’s ironic isn’t it… I’ve spent so much of my time making sure women with HG are not alone, yet it’s the HG community which has left me feeling alone and abandoned.

I do get messages of thanks and support and hope from women who I’ve helped and I deeply appreciate them. I print most of them off and look at them to remind myself why I am putting so much personal time, money, blood sweat and tears into trying to improve care and treatment for families with hyperemesis. But the attacks are also frequent, the accusations that we’re not doing enough, the constant stream of spam, the constant frustration that there are people working against us, the constant defence I have up for our community. And my voice feels weak… I don’t have enough support from the women I have supported and it’s gutting.

Right, pity party over…. I’ve said my piece. I’ll cheer up in a few days I expect and get a renewed vigour to start flogging these bloody books!!

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Comments

I'm so sorry you've had such an awful time of it lately. You've done amazing work so far and I for one am incredibly grateful to have had the pss website to refer to when talking to doctors during my 2nd pregnancy. I want to say a huge thank you for all that you have done. And I'm off to go buy the book for my boys now 😃 I hope you find your path forward and you get your spring back in your step x
Rebecca Sharp, 25th June 2015

Don't take it personally. Everyone wants everything for free, not just the HG community. Look after yourself and remember you and your family come first. Thank you for all you do.
Jade Vernon, 25th June 2015

I'm sorry that you're feeling this way, I know that it absolutely sucks! It's the exact same reason I very almost had a breakdown at the end of last year, and why ultimately redundancy was the best thing that ever happened to me. When you've put everything you have into something, only to have it turn on you, to have your motives (and your ability) questioned, it is only natural to feel betrayed and utterly defeated. And that's when you have the opportunity to decide whether you continue to sacrifice everything you have, or whether you step away. Whatever you choose, make sure it feels right for you. It's going to hurt, sometimes even the right choice hurts, but you'll know when you've found the right way forward as that intensity urgency that you feel at the pit of your stomach will begin to melt and you'll just feel an immense sense of relief that things can change, for the better, for you. One thing someone said to me this weekend was that sometimes you cannot help people, sometimes you cannot change things, sometimes you just have to accept that. But accepting it doesn't mean you don't care... You can still support the cause without giving everything you have in the process. Your support doesn't have to look the way that it has up to this point! For instance, you don't necessarily need to be on the frontline to make a difference. You can make as much of a difference to a single woman through nursing as you can to anyone through blogging or answering a helpline. You'll find your way forward, I know you will, but whatever you do, don't rush a decision, give yourself time to process how you feel rather than trying to squash it down and carry on regardless. Take care of yourself x
Amanda, 25th June 2015

I am sorry that you're feeling demotivated and crushed by the HG community. I am four months in and have had HG since week 4 of my pregnancy. The thing is, I wouldn't buy your book - not because I am not appreciative of the time, money, blood, sweat and tears you've dedicated.. Not because I want you "for free"...More because I'm sick of being sick. I dip in and out of your blogs when I feel I have the energy and the strength to read it. It's something that I wouldn't choose to invest in because it's a time of my life that I want to blot out. I hope this helps you accept the "flop" of your book. I hope you continue to blog, you are helping people accept and understand HG for all the horror that it is.
Esme, 25th June 2015

Oh, Caitlyn, I am so so sorry. I wouldn't give up on the book just yet -- the problem frankly may have been timing -- most books don't launch just before summer unless they are beach books, and books for a community this small are going to take a long time to take off - we're talking years sometimes. Remember also the the U.S. HG community has the "Beyond Morning Sickness" book and the companion children's book -- so your market may really be the UK itself, as U.S. women may feel the advice in your book isn't applicable to their health care system. As for the deleting for selling -- bet I can guess which group that happened in. Keep on keeping on. You are saving lives with what you do. And as someone who has been doing HG advocacy for nine years now, I surely appreciate it.
Cin, 25th June 2015

You're the biggest HG hero out there. You've done so much for HG and hundreds of women and their families! It IS demotivating when you feel you don't get the response you deserve and you deserve a big fat freaking medal for all your hard work. Don't give up! Kick ass and be a rockstar! Love you! Xxx
Helen , 25th June 2015

I don't have the words to describe how much you mean to me. It is thanks to you that I felt brave enough to have a second child. You are an incredible woman - who works so tirelessly and selflessly for others - and have achieved so much. I am so upset that you have been subjected to such unfair treatment and been made to feel so distraught when all you deserve to feel is amazing. So grateful for everything you do. Thank you from the bottom of my heart. XX
Heather, 25th June 2015

Caitlin I am 2. Without you I would be zero, nothing, not here. Without you and your work my mummy would have been alone, confused, desperate, bewildered and so sick she wanted to die. I'm here because one day she found you online, now not only are you a star but you've given my family the hope and power to go on and my mummy has a baby inside her. I loved your new book and it made everything very clear. Thank you :) xxxx
Poppy pearson, 25th June 2015

I was horrified when I read this to learn that you have been so upset and people so cruel. I think the work you do is amazing. Your first book and your blog have been the only things to give me strength to believe that one day I will be strong enough to get through HG and have a family. I hope you do continue with your blog, it makes such a difference to know others have experienced the same horrors. I am so grateful to have your book and the PSS website to refer to when we do try again, so thank you.
Jo, 26th June 2015

Oh my word, I had no idea about all of this - how awful. I think what you do is amazing, and I think both the books are amazing, they are sat proudly on my book shelves. You have helped me, you really have, you helped me to realise that what I am suffering (after HG) is normal, and reading your definitive guide made me feel reassured that I wasn't crazy for even considering a second pregnancy. You have educated me, and helped me feel like I have options and I can prepare for it. You have made me feel supported - through the blog and the books - reassuring me that what I felt was right - I was wrongly left to suffer during my HG pregnancy. Thank you, from the bottom of my heart. I cannot believe what I am reading recently - it may seem melodramatic but reading this and all of the fighting going on about national breastfeeding week has left me feeling total despair if I am honest. I hope you keep blogging, because I know you help people, what you are doing is important, vitally so.
Jenni - Odd Socks and Lollipops, 26th June 2015

I nearly cried when I read your blog forwarded on to me by my sister. My niece suffered HG with both her pregnancies and both she and my sister had so much support from your blogs. I suffered with all three of my own pregnancies over 30 years ago with virtually no support at all. I was so close to termination each time and why I was mad enough to have more than one child is none's guess. How I wish I had had someone like you around then. Even though I am now 60 I have read your blogs and the years roll back and I am there spewing 15+ times a day for the entire time. Please keep on with your fantastic book and realise your critics arena the minority and would complain and find fault with anything and everything. I am sure the book will be an amazing lifeline to many sufferers and their families.
Debbie, 27th June 2015

I'm so sorry, love! I personally only ever find people sharing posts about helpful books, especially books to help children understand, well... helpful. You work so hard and I just want to reassure you that it's important and makes a difference. Like someone else said, everyone wants everything for free... and shame on them in this case. This is the first I'm hearing about your book, and I'm so sad that it has come to this point. Here in the US we have a show called Once Upon a Time, and in one of the episodes the little boy says, "It isn't over, it just looks that way. It always looks worse before it gets better. This is just the dark hour before the hero comes up with something." -paraphrased. You are appreciated. You are loved. You are valued. And I want to personally thank you for your efforts to make life better for those with HG, especially there in the UK where medical options are insanely minimal.
Carolyn Schleufer, 29th June 2015

Fund Hyperemesis Research

The Book

Hyperemesis Gravidarum - The Definitive Guide by Caitlin Dean

The Kids Book

Hoe to be an HG Hero by Caitlin Dean

About Me

I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.

About this blog

Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.

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