The power of shared troubles

I have come to realise this past week that  running a support group is hard work on line, especially when people like to start arguments. Out there there are people suffering from something called topical steroid withdrawl and/ or  red skin syndrome, which can cause some serious issues when it comes to stopping steroids or becoming to addicted to them. Most of these people go cold turkey stopping using the steroid creams all together! now personally i wouldn't want to do this as it looks like hell! though most in the situation would say there is no other way.

My problem with some of these people are that they come onto  groups and start claiming that someone they haven't met has this problem or starts to scare people. Now I know there are issues with steroids, we know the risks and we are careful with what we do.  I will not be told that I am harming my daughter as she is having no visible issues because of her steroids creams, she has no symptoms of these conditions so I take this advice like most with a pinch of salt.

On my own support group on facebook because I had, had enough of these conversations going round in circles and having what seems to be verbally abusive/ pushy people sometimes they are almost as bad as people selling miracles creams! I had one telling me I was a control freak!  Hrm no I just don't want your advice forced down my throat! 

Anway! as we have had half term this week I asked to see if anyone wanted to do anything, This was a open invite on my own page and I have become friends with people from the group, some of the ladies wanted to come round! and it was so nice to finally be able to talk to someone face to face, one who suffers with the condition herself and one who's child suffers.  It's the knowledge that they know how you feel, with all the doctors appointments, all the sleepless nights. No one truely knows what it is like dealing with severe eczema unless they are there themselves. I almost felt like crying when they had gone.

We are not alone! Don't get me wrong I  know there are worse conditions out there, but these normally get more people to help out, financial help,  support groups, councellors something! we get next to nothing! and its a fight to get that! 

So my aim, this year, is to try and set up a support group in person, I should get some feedback tomorrow from someone in the National Eczema Society to set up a meeting and see if we can get anywhere!  

I know its different trying to set up a group in person then on line. But i really feel this is something i need to do and can do. 6/7 years of this knowledge has to come in handy somewhere!!