Tackling the Biggest Taboo
I speak to women day in and day out about hyperemesis gravidarum and the all consuming impact it can have on their lives, not just during pregnancy but for many years afterwards too. The biggest taboo has got to be the issue of termination for the condition. To say it's common would be an understatement. These are not terminations of unwanted babies. Many of these are babies which were planned and tried for within happy and healthy relationships. Some are babies which took months, years and even IVF to conceive. Others are babies conceived by “surprise” yet none the less wanted and welcome.
So why are they being terminated? Well, I have my theories on the subject, specifically around a lack of healthcare professional knowledge and understanding of the condition, an unwillingness to treat and a sheer lack of compassion. But to get to the root of the issue and to understand the situation on a deeper level so that we can look to the future and improve care and treatment for this fatal condition we need to know more about what women are experiencing.
In my new role as Chair of Pregnancy Sickness Support I've established a new working relationship with the British Pregnancy Advisory Service (BPAS), who are the leading independent abortion service provider in the UK. Together we want to tackle the issue of “unwanted terminations” for treatable medical conditions. Too often women faced with taking medication in pregnancy, not just for hyperemesis but a whole host of conditions, are told that “nothing is safe” and “if you can't put up with the symptoms you'll just have to terminate”.
So here is what I need you to do... if you have suffered hyperemesis and you have terminated a pregnancy, whether or not it was the main reason or just a contributing factor, please fill in this survey as fully as possible. The more terminations you have experienced the longer it will take but for one termination it should just take about 10 minutes. It's completely anonymous so you can't be identified.
We hope that by shedding light on this sensitive issue we can look to educate healthcare professionals and the wider public so that women faced with difficult decisions about the future of their pregnancies and the risk/benefits of medication can do so with full and accurate information. So that women do not end pregnancies they actually want to continue because of a lack of knowledge, understanding and support. So that wanted babies are not lost to old wives tales and stigma.
The more women who speak out now the greater the hope for the future, for our daughters and our son's partners. The more responses we get the louder our voice and the harder it is to ignore.
Update: Outcomes from this survey...
Thank you to all who took part in this survey. So many women shared their heartache and distress and gave honest accounts of what happened to them... it was deeply humbling and I've written more to you all here.
The results from the survey were published via PSS and BPAS and is available here.
The survey was met with incredible media coverage including the front page of The Times, an interview with me on Woman's Hour and a double feature on BBC Scotland.
Almost all the major papers covered it in print and online. Here are a selection of a few of them:
The Unempathic Society
Why, in 2015, is it still okay for doctors, midwives, nurses and society in general to treat sick people like idiots?
Why is it that just because someone hasn't suffered something they can't imagine how horrendous it is for someone else?
I've never had a broken leg, but I can begin to imagine it's painful and debilitating! I've never had cancer, but I can begin to imagine it's terrifying, traumatic and painful! I've never experienced a still birth, but I can begin to imagine it's utterly devastating and life changing. I haven't yet experienced the loss of a loved one, yet I can begin to imagine how hard it is to move on and see the sun again.
I've never had food poisoning; I've never suffered mental illness; I've never been assaulted or raped; I've never been in a major car crash; I've never been in a war zone; I'm not diabetic or epileptic or asthmatic; I don't have a congenital disease or a serious allergy; I've never had anaphylactic shock... Yet I can begin to imagine that all those things are scary and difficult things for other people. Things that can take time to come to terms with and can have a major impact on their lives.
And I certainly don't doubt their existence. Nor would I presume that I can ever fully grasp the personal impact those things have on another individual.
Hyperemesis can turn a women from a healthy, happy person, enjoying work and looking after her herself and her house, excited about being pregnant, perhaps newly married, into a shadow of herself throwing up 20+ times a day, bed bound, unable to eat and drink, dehydrated and rapidly losing weight. Yet people all around her will be thinking that she is just making it up, attention seeking, making a fuss, weak, mentally ill etc etc.
Why is that? Are we raised to be so utterly unempathetic? Or are we raised to think deep down that most women are neurotic and melodramatic and prone to making a fuss over nothing?
I don't go around claiming that a medical condition doesn't exist simply because I've never had it or heard of it! “You have what? Oh I've never heard of that so it can't possibly exist!”
I wouldn't tell a pregnant women who has broken their ankle that they should just get on with it and walk on it because when I stubbed my toe that's what I did and it was fine. They should shun modern, evidenced-based science and certainly shouldn't use that big cast because it “might” cause problems for the baby and if they're in pain they should try homeopathy and positive thinking instead of pain killers. Of course there is plenty of evidence that a plaster cast won't cause problems for the baby and there is no (proper) evidence that homoeopathy will help with the pain with anything other than the placebo effect. In the same way there is plenty of evidence that anti-emetics won't harm the baby and no evidence that homeopathy or acupressure helps hyperemesis gravidarum.
But a broken leg shows up on an X-ray whereas HG is soooo much harder to diagnose... you actually have to trust that the woman isn't, in fact, sticking her fingers down her throat and deliberately starving herself to produce ketosis and weight loss and dehydration. That takes a lot of trust right? Cos sensible women with jobs and mortgages and husbands and other kids, they do that sort of silly thing ALL THE TIME!!!
What the hell is wrong with with people that the life of a woman is worth so so so much less that that of a 6 week foetus? Even if you personally believe the two lives are equal why are mothers left to rot and suffer and develop life long complications and risk their own lives and become mentally ill just because they are pregnant. Why are they treated like idiots who are making themselves ill "for attention" or "the drama". Why are they made to feel guilty for “risking their baby”... Don't those silly women know they just need to eat?
Is it that hard to imagine that she simply doesn't have a choice, that the food won't stay down and forcing it in just makes it worse?
And then there are the doctors who would rather a wanted, tried for baby was terminated by the devastated mother than go to the effort of looking up the easily accessible research about the safety of medicating for the condition. And they do this wonderfully clever thing whereby they make the mother feel like it's her fault for “not being strong enough” or “She is too selfish to put up with a bit of sickness like everyone else does”
The ironic thing about the “it's not safe to take medication” card that as soon as you look at the evidence (which is what healthcare professionals are meant to do) then it's pretty clear that by leaving the mother to suffer and rot you are also increasing the risk of harm for the baby! So because people “don't believe” the woman they risk both her and the baby's health and somehow the mother still gets the blame and is made to feel guilty.
And then there are the bosses and work colleagues who think their female employee is just after some time off work. The woman who hasn't been of sick for years, is always on time and stays late and enjoys her job and is sociable with colleagues, now she's pregnant she thinks she can have time off for any little complaint. Jeez... If you want some time off work then fake some other illness, not the one that actually requires IV fluids to stay alive and that risks your long term physical and mental health and your wanted, tried for baby!
Why would a woman, who risks losing her job and house, take months off work for an illness she could fix with a ginger biscuit and some fresh air?
Think about it people... maybe it's because it's really, truly, honestly a really awful and debilitating condition, which is not self inflicted and can not be overcome with positive thinking??
Why would a woman who wanted a baby so much that she has been through 2 years of multiple IVF treatments to get pregnant then consider a termination because she is so seriously ill and suffering in such an unimaginably awful way? Um... Maybe because she is suffering an actual horrific illness but her doctor doesn't believe her because "his wife had morning sickness and just got on with it".
So here are some more things to think about:
- Did you know that people who don't have pneumonia but do have a mild cold don't need to take antibiotics?
- And did you know that people who don't have diabetes but do really like sugar don't need to take insulin?
- And people who don't have a broken leg but did stub their toe last night don't need to wear a cast for 6 weeks and take pain killers?
It's true! And also women who don't have Hyperemesis Gravidarum but do have morning sickness don't need to take antiemetics or get IV rehydration!!!
COME ON SOCIETY!!! Is it really that hard to believe that just because you haven't personally heard of a condition that it doesn't exist? Is it that hard to show empathy to someone going through something that you haven't personally experienced? Is it really necessary to question the validity of your partner/friend/daughter/sister/employee's symptoms just because she is pregnant, when you know that normally she is a happy, busy, strong and sensible women?
And you know what? This post doesn't just go for Hyperemesis Gravidraum... There are so many conditions which people wilfully choose to misunderstand and stigmatise. Ones with clear physical symptoms and others with more hidden impacts.
Tell me... Are your really that arrogant that you think you've heard of every disease in the world? Are you really that self centred that you can't put yourself in someone else's shoes and see their suffering? Are your relationships with people so one sided that when their circumstances change and they need help and support that you turn on them and accuse them of melodrama? Are you so insecure and unhappy in your own life that you show jealousy towards people who need a little extra care and love because they are seriously ill and suffering?
I hope you are not but from speaking to women with a serious medical condition who risk losing their babies day in day out it can sometimes seem like everyone is like that until they go through something serious themselves... But it doesn't need to be like that.
If you are guilty of any of these traits then make today the day you change... Decide to open your mind. Haven't heard of something? GOOGLE IT! Don't make random useless suggestions. Don't know how to help your friend? ASK! "What can I do to help?" Is possibly the most wonderful thing you can say to an ill person. Stick up for misunderstood conditions! If someone is saying something ignorant about your partner/friend/colleague and their medical condition then CORRECT THEM! Coming from someone who doesn't have it can often get through far more effectively than from the sufferer themselves.
THANK YOU for reading this post... Please share it far and wide and let's make the world a more accepting and understanding place for people suffering stigmatised illnesses. And lets make sure that evidence based medicine starts to prevail, even in pregnancy!
The Things People Say!
Following the launch of Hyperemesis Gravidarum - The Definitive Guide (HGDG) and it's amazing reception in the HG Community I've now got time to focus on a couple of other projects I've had up my sleeve for a few years.
HGDG is very much a manual for the condition, a serious guide to the causes, treatment and care for the condition as well as self help and further signposting. While I tend to write in an “accessible” it is meant as a sort of text book for sufferers, healthcare professionals and families.
Now I want to do something a little more creative... more of a mental survival guide if you will... something that will make women feel less alone, more understood and stronger united with the rest of the HG Community. I want it to make women laugh, cry, scream, have hope, feel bonded and ultimately more able to cope with their experience. Hopefully it will also provide insight for people who haven't suffered too and will be essential reading for HCPs caring for our community.
But I need your help... more research!
I get so many comments and emails and I speak to countless women on the phone while running the PSS helpline, but I need them in a format I can work from if this project is ever going to happen.
Please can you take some time to fill this survey out. I've tried to make it a little bit fun so you can really let loose on the things people said to you during pregnancy. Take it as a chance to vent! You can do it with your partner if you want (unless of course he/she said the awful things! In which case I'll send you a copy of the book when it's out so you can shove it where the sun don't shine!).
It's so wonderful we have so many women getting involved in furthering the research and knowledge about hyperemesis... the more decent published material there is in the world the more the general public's perception of the condition will start to shift. In a few years people will have no excuse for never having heard of HG or for thinking it's “just a bit of morning sickness”. Attitudes like that will become extinct and replaced with awareness and understanding, empathy and helpfulness. Women being prescribed medication will be given proper information about the treatments so that scaremongering by miss-educated doctors and unscrupulous journalists will be a thing of the past. Women may still suffer HG but they won't have to fight for treatment and care for their life threatening, torturous and terrifying condition.
In the coming weeks I'm going to be tacking a much bigger subject... it's a massive taboo issue but it needs addressing. It's the fact of women terminating a pregnancy for HG, or rather - it's the fact of doctors terminating a pregnancy for HG instead of treating it. I'm going to be doing a big survey for those who have been through it and that's why I'm giving advanced warning. I'm hoping as many women take part as possible (anonymously of course) but I didn't want to spring it on you... I wanted to give you time in advance to think about whether or not you would want to take part to further awareness and to be ready for the survey. I already have a collaboration with a big organisation looking to collaborate on this issue and changing things for HG sufferers, but more on that next week...
In the meantime, this survey is meant as a bit of fun really... a chance to vent and tell me all the most awful and ridiculous things people have said to you... really go for it!
Helping pregnant mums get the right medical care
As some of you know I've been working hard to develop collaborative relationships between organisations such as PSS and the Pregnancy & Medicine Initiative. There is only so much individuals and small organisations can do on their own and by pooling our resources and working together we can reach larger audiences and have a greater impact nationally and internationally. I've featured a post by Caroline before and since then our working relationship has strengthened further and last week saw the launch of a joint fundraising and leaflet distributing project to get information about medication in pregnancy to the women who need it. Over to Caroline to tell you more about this important and exciting project:
When I was pregnant with my first child, I often felt vulnerable and under-informed. Whenever faced with a medical condition, even the smallest (skin rash, a bad cold, nausea…) I would turn to friends or the internet for recommendations, and got very conflicting information. And more often than not, the advice was “wait it out” – doing anything other than drinking tea with lemon might harm the baby.
In my case, waiting it out was a reasonable option, and while I felt miserable for a few weeks during my pregnancy, I didn’t face any serious effects from these minor issues. But what if I had faced a major health issue, I asked myself?
Much too often, women who face a serious medical condition while pregnant are thrown into a whirlwind of contradictory advice, and need to make important decisions about their health without proper information or support. Very often, they even receive conflicting medical opinions from specialists and obstetricians, and must make the difficult choice of following one or the other’s advice, at the risk of being stigmatised.
What if we could help women in this situation ask the right questions to help them make these important decisions?
At the Pregnancy and Medicine Initiative, we believe pregnant women have the right to mare informed health-related decisions and have the right to access the medical care they need. We’ve developed a kit that can help facilitate the dialogue between them and their doctor(s), so they can get answers to their questions, or at least encourage their medical team to look further than the obvious solution.
We need your help. The kits were developed with the help of our Advisory Board, made up of medical experts in the field of oncology, bioethics, rhumatology, obstetrics and pediatrics who are involved in the issue of pregnancy and medicine. We are looking to raise funds to distribute these kits across hospitals in the UK so a maximum of women can benefit from them.
Will you support us? £10 will help us reach about 150 women. In addition, part of the proceeds will go to our partner charities, Pregnancy Sickness Support and Mummy’s Star, who are doing fantastic work supporting pregnant women facing a serious medical condition.
Thank you in advance for helping us. Please vist our fundrazr campaign to find out more: https://fundrazr.com/campaigns/cvu10/ab/c4RId4
Brushing my teeth still makes me retch... and other post hyperemesis phenomena
When the toothpaste foams just a little too much, or I swill my mouth and spit in the sink... sometimes it still makes me retch.
When I'm at someone's house and they make a cup of tea without mentioning it has earl grey in it... I'm trying not to retch.
When I clean the family loo and look down in the bowl... I have a sense of over familiarity, it induces nausea.
When I wake in the night to my children's needs... my stomach does a flip, a familiar sense to vomit urgently.
When my children or dog are sick... I can't help but retch and gag.
When my children throw up in a bowl... I have to hide it in a corner for my husband to dispose of after work.
When we drive down certain roads... it is landmarked for ever by the places I threw up.
When I look at my wrists... I still see the scars from the pointless acupressure bands I wore to prove to the world I was at least trying to "help myself".
When someone mentions ginger... I'm filled with rage and anger.
When someone asks about a cure or the cause for hyperemesis gravidarum... I'm filled with sadness that neither are yet known.
When I look at my children, sleeping in their beds and I stroke their soft faces and kiss their little cheeks... I know it is still worth it.
When I post my blogs and answer emails and calls from desperate women... I know I am helping others.
When I write articles and publish research... I know I am changing the world.
When I look at my life... I know I am changed... because of hyperemesis gravidarum... and that's okay.
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
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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