I'm so immersed in the HG world that it
seems to just surround me almost constantly even though I never
intend to suffer it again and bar the odd flashback when one of the
kids is sick and overwhelming nausea if I'm woken suddenly in the
night, I have been lucky enough to come out relatively unscathed. But
my thoughts recently have been occupied by those women I call
friends, many of whom I have never met, whose suffering is on going
and all consuming.
The infuriating thing is that so much
of the suffering by women with Hyperemesis Gravidarum (HG) could be
avoided if only they were A) treated pro-actively by doctors with the
various safe and effective medications available and B) if the
general public and their own friends and family had a better
understanding and sympathy towards the immense and intense suffering
they are experiencing.
There has been yet more, excellent,
research published recently about the safety of medications such as
Ondansetron as well as research about the dangers to mum and baby if
HG is left without sufficient treatment (including placental
abruption, small for date birth weight and so on) and in this day and
age there really is no good reason why women are being refused
treatment other than outright prejudice and ignorance. Even a busy
doctor should have the 5 minutes needed to conduct a quick search for
the research to satisfy them about safety and the Pregnancy Sickness Support website has made that even easier with all the references and
many full text links! So it is just heartbreaking and frustrating to
hear this week of yet another woman whose GP refused medication
beyond the first step (on the grounds that they don't know they are
safe for the foetus), didn't refer her to a consultant and gave her
no option but to seek termination as she was too ill and scared to
fight. This woman had taken research to her doctor, this was a wanted
baby... when you are so ill that you can barely speak without
vomiting it is extraordinarily difficult to advocate for ones self.
Since when was termination considered safer for the foetus then
giving the mother medication?
Moving on to point B... I know I've
said it plenty of times before but peoples well meaning comments
about trying ginger or sea bands or (my personal favourite) “thinking
positively” may well have the intention of trying to help, but they
really really really don't. Comments like these add significantly to
sufferers feelings of isolation, misery and ultimately of failure.
The implication is that they could be doing more to help themselves;
do you really think that a woman requesting termination of a
desperately wanted and loved child just needed some “alternative
therapies”? Most women will have tried these... I certainly did, I
tried ginger (in every way, shape and form including strong
capsules), accupressure (I have scars on my wrists from seaband
wearing for 27 weeks), homeopathy (sorry, I mean sugar pills),
hypnotherapy, reflexology, relaxation CDs, aromatherapy and all the
other magic cures people suggested left, right and centre.
The problem is not just with the
“helpful” suggestions, at least they are well meant! But the lack
of understanding that Hyperemesis Gravidarum is not a normal part of
pregnancy but a severe complication is just so rife amongst the
general public and healthcare professional. It is not like the
“Morning Sickness” that plenty of women get (although rarely in
the morning) and comparing it so is wilful ignorance. In the early
days of my third pregnancy a friend who had three children said to me
“I don't understand, I felt a bit sick in mine but I didn't think I
was going to get HG and I didn't so why do you think you'll get it?”.
This is like me telling a woman with gestational diabetes that
because I didn't have it she ought not to!!! Again, the implication
is that it is my own fault and a case of mind over matter.
Anyway, back to the point of this
blog... so much of the suffering of women with HG is avoidable but
suffering they are and right now my thoughts are with them... all of
them. I can't take their suffering away yet but I can fight to reduce
it and improve their situation. When I think about the months and
months I spend lying still, hanging over the edge of the bed in a
dark room with vomit trickling out of my mouth after the 25th
emetic episode that day, knowing I had weeks if not months of it
ahead of me, feeling like my whole body was poisoned and I was dying,
wishing I could quench my thirst with just a few drops of water but
knowing even sips would induce more vomiting, feeling like an
absolute failure as a woman, wife, employee, friend (missing weddings
and christenings)... mother! When I think about that stuff and the
women who are going through it now and those who are still suffering
from complications caused by it and those who will have yet to go
through it to fulfil their basic evolutionary function and hearts
desire, my heart bleeds... and then it grows stronger!
For it is largely HG that has made me
who I am now. It has had significant silver linings in my life, not
least the three packages of my genetic material which will go on
beyond my meagre lifetime and whom I adore with all my heart and
mind, but in so many other ways too. It has made me stronger mentally
and emotionally then I thought possible for me (I can't claim
physical strength as 27 months of being bed bound has left me
pathetically weak, although I am working on that). It has given me
endurance and vision for achievement but above all it has given me
insight into suffering which is transferable across situations and
conditions and insight into how a lack of open-mindedness into
conditions can add to suffering in unimaginable ways. The vogue at
the moment is to be “open minded” to alternative therapies and
the power of the mind and so on, yet these same people who claim to
be be open minded are unable to conceive that others may suffer in
ways they don't or can't even imagine; everything from mental health
conditions to Myalgic
Encephalopathy, life after a stroke or suffering migraines, until you
have walked a week (let alone months on end) in someone else's shoes
you simply can not know their burdens.
Great post Caitlin!
ReplyDeleteI came across the way women are treated so appallingly through my years struggling with my periods (and then finally being diagnosed with Endo just because I fought and fought!)
And yet none of that prepared me for the absolute horror of such sickness in pregnancy and how deeply the way healthcare professionals treated me like nothing was wrong would affect me. I mean, I had been pretty darn ill with my Endo but at least I could still function and fight my corner. With the hyperemesis it was different... I couldn't fight and because I never received an official diagnosis I still, to this day, feel like a fraud "oh maybe I didn't have it severely enough". How stupid is that? And all because of the way you're treated in pregnancy as "making a fuss".
Like you, I am so determined to make a difference, so much so it hurts sometimes. I want to change things so that women are treated better, so that they know they aren't alone and where to seek help and support. And I want us to eventually get to a point where women are treated promptly, so that some of the physical and emotional effects are limited and so that one day (possibly very far off, but one day nonetheless) women don't have to make the decision I have of never having another baby. Because, ultimately, there will always be that question "what if..." as in "would I have made the same decision had I been treated better first time round?"
One day we'll get there... one day!
Reading Spewing Mummy's blog brought a tear to my eye. Not because I have ever suffered from HG but because my lovely girl did......... As your blog shows many HG sufferers do not get the right treatment - even now and so many suffer needlessly.......! My lovely girl suffered from HG 5 years ago now............but it still feels like yesterday. Her experience only ended in the delivery suite when her beautiful daughter was delivered by c-section. Mummy's first words were "get me something to eat" ..........oh how we wished to hear those words in the nine months before!! We had never heard of HG before this and there was not much information available.......although we scoured the internet for anything...... Some friends and family understood - most didn't! Our daughter just became more and more ill but she held on to the belief that it would all be worth it (keep your eyes on the prize)- it was - she now has a beautiful nearly-4-year-old-daughter. But she suffered - not only with HG - but her marriage also failed - her career almost certainly suffered - she lost valued friendships. Sadly - she now has ME - almost certainly a direct result of HG. Thankyou for raising the G profile - it is essential that everyone understands that this is so much more than 'morning sickness' and that a ginger biscuit will really not suffice...............
ReplyDeleteI hear you. I had severe HG for the duration of two pregnancies.
ReplyDelete