Survive with a little help from my friends
In the third of my series about how you can make a difference to hyperemesis sufferers now and of the future I will talk about peer support systems for hyperemesis gravidarum.
Way back in my first pregnancy, bar a yahoo group which seemed to be fizzling out, there was no peer support system. Facebook was in it's infancy, although there was a small American group I joined called “Hyperemesis Gravidarum, when it's more than morning sickness”. The lack of support was perhaps the hardest aspect of the pregnancy, apart from the obvious constant vomiting. No one around me seemed to understand apart from my husband who was witnessing it first hand and was as equally scared, confused and alone.
Fast forward to 3 years ago when I was trying again for my third pregnancy and things were changing. Simultaneously I found out about Pregnancy Sickness Support and a UK Facebook group popped up, there were six of us and we grew week on week (it now numbers over 480 members). Numbers were exchanged on private messages so that we could text each other too. It made a phenomenal difference. I was no longer all alone and had a group of women who knew exactly what I was going through... all those mixed emotions of wanting a baby but being terrified of the pregnancy, of wanting to enjoy it but hating every moment.
Facebook support seemed great and I was in mutually supportive relationships with three women that summer... or so I thought. One of them turned out to be a girl, not with hyperemesis gravidarum, but with mental illness in the form of Munchausen By Internet (MBI). Now not wishing to do a post specifically about that, although perhaps I will one day soon, I am telling you this because it explains my motivation to set up a solid, safe and effective peer support network to prevent the months and months of intense support we are all more than happy to provide being wasted on people with ulterior motives.
From this spawned the Pregnancy Sickness Support Network we have today. Women who have been through hyperemesis are able to register to support others, receive training (including on MBI, recognising it and handling it), are fully insured and get ongoing support from the Charity. Women needing support are assessed and matched with supporters who are experienced, knowledgeable and usually geographically close. It's brilliant and it works.
Barr a cure for hyperemesis, an effective support network is probably the second most important development for HG sufferers around the globe. It is the most pro-active part of the Hyperemesis Improvement Movement because we don't need doctors to listen to us, or relatives to shut up about ginger or celebrities to stop glowing in order for us to support each other. Medication can only help so much but support from an army of comrades can get you through the long lonely months of suffering.
Facebook groups are all well and good but my goodness there are dramas and blow ups and women in severe need of support are overshadowed by women who demand attention regardless of need. A group of over 480 women is simply too big to offer meaningful and effective support and too often I witness appalling “advice” being doled out in worryingly persuasive comments. Or I see doctors correct and cautious prescriptions being challenged by women who hold no responsibility and know nothing of contraindications or pre-existing conditions.
So my call to action in this post is this: Get on and volunteer for the cause, support women suffering now and if you are one of those suffering then accept the support we offer... we've been there, we want to hold your hand and text you at night and again in the morning to let you know you are not alone. We can sympathise about the revolting saliva and help you see the funny side of the ginger biscuit comments. We can share our survivor strength and share our wisdom about speaking to doctors. And when you have made it through and have your precious baby in your arms, then you too can reach out to others and support them.
If you don't feel like you have time to commit to formal volunteering at the moment then how about getting involved on the forums where you can offer support in an informal way. Both PSS and the HER foundation have online forums to get involved in. If you are suffering then I would strongly urge you to seek support and advice via these rather than on Facebook. They are moderated by experienced and trained volunteers and you can make online “friendships” safe in the knowledge they've weeded out the trolls and fakes.
In the last year alone the UK Network has grown rapidly although we still have massive gaps in geographical areas and over stretched volunteers. My hope is that 5 years from now we will have volunteers in every city, town and village in the UK... there are certainly sufferers in all of them so I for one think it's an achievable goal... with a little help from my friends?
Here is how you can volunteer:
In the UK or Ireland apply through the Pregnancy Sickness Support website here
In Netherlands get in touch with Rosa Overbosch via her website
For pretty much the rest of the world get in touch with the Hyperemesis Education and Research Foundation.