Post by Veritee on Apr 10, 2004 9:50:30 GMT
It is both an honour and a privilege to host this site – but also a huge responsibility. I realised when I started the site what a responsibility it was, but nothing brings this home more than when the site is not positive for someone and especially if it is my words that have been less than helpful.
I only want this site to positive for its users and it actually hurts when it is not, whatever the cause and I am always striving to improve the site.
However I recognise that I am only one person and can not ensure this, however I do try to ensure that my own responses are at least mildly helpful.
However it is a very fine line I tread.
I do not want to just roll out the sorts of reassurances I got from many when I was ill, ‘you will get better’, ‘you are doing a good job as a mum’, ‘one day you will wake up feeling your old self’, and advice like go to your GP, wait for your meds to kick in, try to sleep in the day when your baby is asleep, get your partner to take the baby out, etc all true and well meant but not always specific to my situation at the time.
Also I want to do more than just say I feel for what someone is going through and I care, because it is because I care that I run this site which takes up so much of my personal time and energy. I do really care, that so many women have to go through this awful pain and hurt of this terrible and cruel illness, which can rob you of so much. I want people on the site to understand that I care but I want to offer a bit more.
I try to ensure that everyone on the site gets a response when one is asked for (not necessarily from me) and when I respond to posts I want to respond in a real way to each person. I try to make a response which is specific to what they have said and something which may help them to move on, try a different approach, see things form another angle or viewpoint, seek a different treatment or support, or to help them cope through PNI and survive.
It is a fine line I tread because what I say is only my opinion or thoughts based on what I know of someone’s situation through often brief, typed words. I do not know the person and can have no real idea of all the factors and so I can say something unhelpful or at the time, tactless ( if you meet me in person I am a pretty tactless and unsubtle person - the up side of this is I am very honest also) something inappropriate or something just plain wrong!
People can also be very sensitive to what others say when they have PNI or at least that was my experience. I became very fragile about how people saw me and what they said and this has never really gone away. Some unhelpful things intentional and unintentional that people said when I had PNI are ingrained on my mind; I will never forget what was said, or the hurt.
The last thing I want to do is to make someone else feel like this, or what I say to be that important to anyone.
Please try take from what I write the things that are helpful to you and ignore that which is not. This may be hard to do but as long as you remember that I do care and I mean well, perhaps when I get it wrong, which is often it will matter less.
Also I am only one person who uses the site and what I say is only my opinion or viewpoint. All that others say have equal weight on here and often someone who is still going through PNI can give better support than someone who has distance from it.
Just keep supporting each other and I will chip in where I can.
All the best
Veritee
