Everyone needs support and questions answered by those in the position to give the information especially when starting out on your journey. Joining a supportive group is key to navigating around this strange new world.
I have been part of the Internet forum / facebook group (secret / closed and open) community for quite some time now. When I first became ill and was searching for answers they became my lifeline and a mine of useful information, not a day went by without me logging onto one of these sites.
I have seen the best and worst in these kinds of groups, so for the last year or so I have stepped away from many of them. Too many “secret” groups on facebook have ended up as peoples personal power trips banning members who dare to question their authority or they have just turned into hate campaigns against individuals.
Stepping away from the Forums outside the world of facebook groups was for a variety of reasons mainly because I just couldn’t handle what was going on with my health and by ignoring the forums, I thought I could ignore what was going on with me. The same reason why I ignored my blog for so long. You have to admire my logic.
Its always very difficult when you are dealing with a situation when the reader is free to interpret your comment / question via the written word only. So much of what we interpret when speaking to another human face to face relies on body language and the tone of someone’s voice. In the cyber world one missing word or misplaced capital letter can lead to a whole heap of trouble! Its trouble of the kind that I would rather avoid when I am dealing with my own problems and just looking for some support / advice.
I will be honest I’ve been kicked out of three secret facebook groups. I would love to tell you some lurid tale of why I was kicked out but I actually don’t know the reason why other than the fact I was facebook friends with some individuals that the administrators on these groups did not like. I found it quite hilarious at the time considering that facebook is supposed to be for users over the age of 13, however the admins of these groups seemed to treat it like the school playground, which is very sad when you consider the aim when creating these groups is to share information and support each other.
I would like to say that I am still a member of several private / closed groups. These are well run and not dominated by one individual. They have been created with the sole aim of helping and supporting the members of the group.
There is a world of difference between a well run Internet forum and a secret facebook group. Internet forums aren’t secret for a start, there’s no special status conferred on its members. Internet forums are not “invitation only”. Internet forums also usually have active administrators who step in at the first sign of trouble eg Medical advice being given by someone who is not a Dr, bullying, religion or politics. Believe me nothing gets people stirred up on an American Forum than mentioning the Affordable Care Act or telling them that you have no religious beliefs! Ive never done that but I have enjoyed watching the drama unfold. When you don’t get out much you don’t get that kind of drama that is normally confined to social situations or the workplace!
Facebook secret groups don’t seem to apply the same standards as the Internet forums ( well not the ones I’ve had the pleasure of being kicked out from). I’ve watched far too many facebook administrators actually get involved in the mud slinging and then kick the victim out! Entertaining as it can sometimes be it does leave me feeling a little sad, we have so many things against us already and then we start turning on each other. It just doesn’t make any sense.
Internet forums don’t suffer from the same issues that the facebook groups (all groups not just secret ones) tend to succumb to. With Internet Forums there are a larger number of members, so no one person can dominate the group and turn it into their own personal whinge fest. Many of the facebook groups I have stepped away from were dominated by two or three people, who seemed to decide if your question was worthy enough to be answered. I found when posting comments that if I didn’t have their approval then my question would be ignored. If it happened just the once or possibly twice I could accept that no one in the group had the answer, when it happens on every question you post you tend to see a pattern. Such was the strength of these individuals if you didn’t have a place in the inner clique you definitely felt the cold!
My experience with Internet forums has been completely different, people bend over backwards to help you. Even if someone doesn’t have the answer to your question they will reply to your post, sympathise and suggest someone who might know the answer, who you can directly message.
On Internet forums I’ve had a mostly positive experience, yes I’ve seen infighting amongst members, there always seems to be someone who considers themselves the Alpha of the pack but I’ve also seen how quickly the dedicated teams of administrators step in to squash that kind of behaviour.
Also I like the way that you can report bad behaviour to the administrators of the Internet forum totally anonymously and feel confident that unlike facebook, the Admins won’t tell the person who complained and then hold a long conversation about you in secret because they are personal friends. This is due to the sheer size of the forum membership, whereas on Facebook you are normally invited into these groups by your facebook friends. A successful administrator needs to be able to step back and see both sides without being caught up in friendships / loyalties.
Due to the sheer volume of members the Internet forum doesn’t seem to become engaged in the “who is the sickest ?” game, I’ve seen this played out on facebook so many times. When did being ill become a competition? Its not a competition I want to participate in. Everyone who suffers from any disabling condition be it visible or invisible doesn’t then need to engage in this strange competition that seems to happen on these pages. It seems to be for some individuals a badge of honour to be the sickest, the one having the hardest time, one can never post without being reminded of how much worse it was for them due to a, b, or c. Believe me I know some people have a terrible time of it but since when have we been judged on how ill we are? What is it about facebook that seems to bring this out in people?
Some of you may recognise what I am talking about in the last paragraph, some of you may think I’m a wicked, unsympathetic person. Hang around these groups for long enough and you will see exactly what I mean.
Due to the competition aspect that has evolved in some of these facebook groups other groups have sprung up, most of them containing the word Positive in their names. Having lurked on several of them ( I like lurking) it now seems there is a competition about who can be the most positive about their condition. Strictly no whining allowed on these pages. So what do you do when you are having a really shitty day and need to reach out to people? Sometimes positive messages just don’t cut the mustard.
Does anyone think like me that things are getting just a little bit crazy? Aren’t these pages set up for fellow sufferers who want help, support and advice? Why do facebook groups ( the groups that I have been involved in) seem to forget that?
Now don’t get me wrong not all facebook groups are like this, some are very well run, particularly those that are officially linked to charities. These tend to have clear messages pinned to their page to remind members what is and what isn’t acceptable behaviour. Their administrators also seem to be much more responsible and proactive, they step in when things are getting heated. They will shut down conversations if things are getting out of hand and will warn members privately that their conduct is falling below the required standards of the community. They act in the same responsible manner that the Internet forum does.
For someone new to an illness a good facebook page / Internet forum can be a life line. It reassures you that you aren’t alone, points you in the direction of good medical information and does not hold some members in higher esteem than others. Everyone is equal on these sites and everyone is there to learn together. No question is too stupid / silly and the members of the community are there to help you.
Two Internet forums that I hold in particularly high esteem are;
this covers a whole host of illnesses / conditions, too many to mention individually and has a very good Myasthenia Gravis Forum. Without this forum ( it was the very first one I joined) I would have been completely lost. This is the only Internet forum I use for Myasthenia Gravis. It was my mum who found this forum.
Not only is this a wonderful forum but it has a wealth of information available for people who suffer with Dysautonomia ( Pots, OI and EDS) . It prides itself on keeping its members up to date with the latest medical research papers. This is the only Internet forum I use for dysautonomia.
Unfortunately I can’t provide you with any links to Facebook groups as many of them are closed groups and you need to be added by a member of the group.
However I can provide you with the home page of Pots Pals UK which also has a facebook page.
This site provides good information for people with POTS in the UK and by joining (free) you can then access the facebook group should you wish to.
A great organisation to join that has some brilliant fact sheets you can hand to medical professionals. It also has a message board / forum you can use.
These are the sites / groups that I would recommend. Ehlers-Danlos UK also has a presence on Facebook and Twitter.
Not all groups are badly run little empires its just Ive been around the block a few times since 2007!