Caitlin Kay-Smith is the Founder of Hyperemesis Australia and today, on Hyperemesis Gravidarum Awareness Day, Caitlin shares her experience with us.
Describing what it’s like to live with Hyperemesis Gravidarum to someone who’s never experienced it is a pretty hard task. I get asked to do this pretty often and even though I’ve lived through it twice it’s still something I struggle with.
I think the best I can do is to ask you all to imagine the things in your life that make you ‘YOU’. The big things, like your work and hobbies, friends and family, your favourite music, books and TV shows. But also the little things that contribute to making us all feel human: eating and drinking when we’re hungry or thirsty, exercising and sleeping, showering and brushing our teeth, even annoying things like paying bills or folding laundry or stacking the dishwasher. Imagine all the big and little things that make up your days, that fill your time and make you feel human and normal and like ‘YOU’.
Now, imagine that one day all of those things - the big things and the little things - were taken from you. You can’t work or sleep or socialise or watch TV or make phone calls or do chores or brush your teeth. Imagine that all the things that filled your days have been taken away and in their place all that is left is crippling nausea, constant vomiting, food and smell aversions, anxiety, depression and suicidal ideation. Now, imagine all of this is happening to you because of what the world will tell you is the best, most exciting thing that will ever happen to you - pregnancy.
I’m sure it’s very hard to imagine what that might be like - it’s a lot to consider and sounds, quite frankly, a bit crazy. But that really is the impact of HG on sufferers.
Personally, I never received an official diagnosis of HG from a healthcare professional. After presenting to ED at 9 weeks pregnant with my first baby after four weeks of vomiting 20 times a day and weight loss of over 6kgs I took to Google to try and make sense of what was happening to me. I read what little I could find and diagnosed myself - an incredibly common experience for HG sufferers. Next time I presented to ED I told the staff that I thought I was suffering from HG - one out of the seven people I spoke to knew what it was, she agreed with my self-diagnosis and that was that.
What followed was 30 more weeks of intractable vomiting and nausea. I lost 15kgs, tore through my oesophagus, broke so many blood vessels in my face that I permanently had two black eyes, passed out in public four times, and had 17 hospital admissions. At 30 years old, newly married and after having lived out of home for a decade, my new husband and I had to move in with my parents. He had to work and I couldn’t be left alone. I had to shut down a business I’d spent years working to establish because at four months pregnant I just couldn’t get out of bed. I refused to refer to my unborn baby as anything other than ‘The Parasite’ because there was nothing good about being pregnant with her - just suffering.
If the physical toll of Hyperemesis Gravidarum doesn’t sound bad enough then let me tell you about the mental anguish. For most of my first pregnancy I passed the time by imagining how much better my life would be if I had just chosen to abort my much-loved and longed for baby; or if I’d had a miscarriage; or if I just simply ceased to exist. It’s hard to see a mother speak about her children that way, and it’s hard for me to publicly admit these things but I want you to have a sense of how great my physical suffering was. I was so very sick that my mind turned against itself and went to a place that was so dark I was terrified of being left alone with my thoughts.
Anyone who has contemplated suicide or abortion will tell you that even if that thought is only fleeting and quickly quashed, it changes you. To this day, I look at my beautiful children and wonder how I could have imagined ending the pregnancies that resulted in them. I look around at my full and happy life and wonder how I could ever have wanted to leave it. But that is the legacy of HG - it changes you forever in ways that you will continue to grapple with long after pregnancy is over. And I am one of the lucky ones.
Sufferers accept that there is currently no cure for this horrendous condition - but that doesn’t mean there’s nothing that can be done to make the experience a little easier. As a community we need to be focused on better equipping the healthcare system, and its employees, to manage this condition and care for its sufferers. That means access to educated and empathetic healthcare providers who are willing to provide medication, fluids and supportive care is a must.
So much of the burden on HG sufferers stems from the isolation and shame associated with not loving pregnancy. We need to allow women, parents and families to safely express their feelings, no matter how complex, and be validated in whatever their experiences might be.
There is an overwhelming amount of products available for pregnancy and postpartum but until recently almost none of them were designed with HG sufferers in mind. This means that we’re often left feeling excluded and further isolated from the rest of our community at a time we need them most. Products designed intentionally to support HG sufferers during their pregnancy and as they recover postpartum are so valuable and meaningful - so much so that when I was sent a pack of Hydramama and read the note from Keira about why she created this product I burst into tears. Reading the words ‘hyperemesis gravidarum’ (words I read and write and say on a daily basis) on product packaging felt truly surreal - it had never happened before, even the medication we take doesn’t include the name!
My pregnancy journeys are behind me now and not something I will be tempted to revisit - but I do find myself wishing I’d had Hydramama when I was pregnant. I wonder what might have been different, or how I might have been able to manage? Physically, it would have been great to have access to a drink I could tolerate that wasn’t full of sugar, something I knew I could drink that wasn’t doing any harm, and actually was doing good for me and baby. But I think it would have been even more valuable for my mental health - knowing that this product was created with me in mind, by someone who knew exactly the hell I was living through and wanted to help me. It would have meant so much to me.
I started Hyperemesis Australia in between my two pregnancies. We are a charity that focuses on changing the way pregnancy sickness is experienced by sufferers and treated by practitioners. Every day I speak to women whose experiences, while totally unique, also totally mirror my own. They feel beaten down, invalidated, humiliated, ridiculed and broken by a system that is, often, intent on denying that the condition they’re living with even exists. This is not the introduction to parenthood that anyone deserves and the reality is that it doesn’t have to be this bad for any of us.
If you are looking for a way to give back to the HG community once you’ve moved through it, or to support the HG sufferer in your life then giving to Hyperemesis Australia is a really impactful way to do it. We are the only Australian organisation offering support to individuals and families living with this condition, and working with the healthcare system to make lasting and sustainable change. As a small independent not-for profit, Hyperemesis Australia relies on the generous donations of people like you. We receive no government or private philanthropic funding so community donations are what keep us running. You can make a once-off donation or sign up for a monthly subscription.
Your donation makes it possible for us to:
- Run our website and important resources for sufferers, their loved ones and the healthcare sector
- Make physical resources for conferences, hospitals, GP clinics, midwives and obstetricians
- Provide 1:1 support for sufferers when they need it most
- Advocate within the healthcare system and the media to create awareness of the condition and change to treatment systems and protocols
- Participate in research into the condition, the lives of sufferers and treatment options
So please, if you or someone you love has been impacted by this condition or supported by Hyperemesis Australia please consider making a donation to us. We really need your help.
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