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 25themetic 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.