FaceAche versus Forums
Facebook has lots of pros about it for organisations like Pregnancy Sickness Support. But recently for me it's become more FaceAche than FaceBook
I cannot deny that social networks have enabled Pregnancy Sickness Support to grow so dramatically over the last couple of year. I have been able to network with sufferers and interested healthcare professionals which I would otherwise never have found. It is also a useful tool for promoting the charity and our work, raising funds and generally raising the profile of the condition.
During pregnancy Facbook (FB) was wonderfully supportive and massively reduced the isolation and misery of months in bed.
But, and it's a big BUT... It is NOT the place for seriously ill pregnant women to seek medical advice and information! Yet an awful lot of women do, and many of them go on to take the advice from these random internet strangers. In the last couple of years I've even witness women offer to post their prescription drugs to each other – crazy!
The sad truth is that the reason women are looking for info from FB friends and on twitter is, more often then not, because they have been let down by their health care professionals. The ones with the good doctors and midwives go to them. But when you have found the strength to go and seek help from professionals and are fobbed off with “It's normal and you mustn't take any medication in pregnancy – try ginger” then, naturally, you turn to the large online community of peers who know it's not normal to be that sick, the meds they are on are fine and ginger is a load of b*******.
In response to the increasingly worrying content on the facebook group yet recognising this need for women to seek online peer support, 24/7, PSS have set up a forum on their website for women to get support and information instead. It is run by our volunteers who not only have training but also have direct access to our medical experts and can provide accurate information about treatments. We have a number of nurses and doctors as members of the forum and you can see who are registered volunteers from their avatars.
I want to implore women suffering, not only from HG but any condition which is often misunderstood or under-appreciated to not just take the advice of strangers on a social network – seek proper information from the charity supporting the condition, from experts in the field, from trained healthcare professionals – there are good ones out there and we can help you find them.
Use facebook for what it is intended for – socialising, support and friendship. By all means go on and have a moan about what an awful day you are having or how the smell of you partner is making you sick or the fact that your doctor was really unhelpful. Be empowered by the united voice of hundreds of women with a shared experience. But for goodness sake, when it comes to actual medical advice don't go on Facebook!
The link for the UK PSS forum is http://www.pregnancysicknesssupport.org.uk/online-support-forum/
If you are in the USA the HER Foundation also have a forum: http://www.helpher.org/forum3/
In the Netherlands they have a support forum also: http://www.steunpunthg.nl/phpBB/
Women from other countries are welcome on all the forums but bear in mind that information about treatment will be country specific.