This is something I’ve noticed over the past ten years and it’s not having a go at people and may end up slightly ranty because it’s one of the reasons I ended up moving away from the ME message boards and the community in general for a while. Sorry in advance if it does.
One thing I’ve noticed in the ME/CFS community, or at least the ones I’ve been a part of, is that there always seem to be some people who see it as a competition; who’s the most ill. I don’t mean people who post about how bad they feel as I think that this is an important part of the community; being able to support each other through the good and the bad as people outside of it do not understand how it can feel like other sufferers do.
I mean people who will see a post about someone who has managed to do something, a big achievement like maybe being able to go away for a weekend and not having any problems afterwards, normally people who are on the higher end of the ability scale who can manage to do more than those who are more ill, and there will be people who see this and then make a negative comment about this, or a comment that can easily be seen as negative.
I can understand how sometimes reading that someone has done something big can make you feel a bit negative about your own ability level at the time, especially if they were around the same level as you a few months before and have improved dramatically, but if that’s the case then just take a step back or try not to read these topics. I’ve spent months away from Facebook because of this before, it’s hard to remain positive about how far you’ve come in recovering when others are doing so much more but you can remove yourself from the situation of reading about it if it’s that much of a problem for you.
The people I’ve made the post about seem to try to exclude people because they’re at a higher level ability wise and they make these people feel like they shouldn’t be a part of the community because they can do whatever it is. I really don’t understand this; we’ve all got the same problems, sure the symptoms may be slightly different and affect us in different ways but at the end of the day we all have a chronic illness and we should be trying to help each other through it not trying to put each other down. I know this is a problem with everyday life; there are always people who will try to put others down and in these communities just because we have ME doesn’t make us all the same, there are people from all walks of life in there, but for some reason when it happens within a community which is meant to be there for support and sharing experiences is gets to me more than it does in everyday life.
Sometimes I think it can be just that the internet doesn’t show emotion when you read the message boards so it can be hard to see how people mean it but things can be worded in different ways. If you’re not sure about how your comment could be taken then read it again before posting and see if you can read it as a neutral person who doesn’t know you, which is how most people on these message boards are reading it.
I’m not sure if this competition thing is something that’s more around communities with a younger user group. A lot of the message boards I was using seemed to have a large amount of younger users, I was also in my late teens at the time, so maybe it’s partly due to that but I have a feeling after hearing similar experiences from other sufferers it may be a general problem within the community. I have now joined AYME graduates which is aimed at 26+ (though you can join at 24) and so far it’s a really nice community, I’m crossing my fingers it stays like that as I do think that message boards and groups are an important way of communicating as I’ve not really met many other people with ME in ‘real life’ besides a local group that was sort of run by AYME.
If anyone has any recommendations of groups or message boards to try out I’d love to give them a go, I’m getting back into the community a bit again and would love to be able to talk to others who have ME.
I’m not sure how easy that was to read, it did end up turning slightly ranty and to be honest I think I forgot some of the points I originally planned to make. I might do a part 2 version of this with better planning but I’ve had an appointment with a self employment helping person today and my head’s a bit fuzzy. I just really wanted to get a post up tonight as I missed last week’s due to my health going a bit weird on Wednesday evening and this was a topic that’s been in my mind for a while since starting this ME section.