ME, Myself and I: It’s Not a Competition

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.

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6 thoughts on “ME, Myself and I: It’s Not a Competition

  1. Rambling can be very helpful to get things off of your chest. I cannot relate to having ME but I can see where you are coming from and I think tone of voice can be lost online. I must admit I haven’t joined any groups on Facebook with regards to my Epilepsy, perhaps through fear of being dragged down by negativity, I’m not sure. We are all on our own journey and sometimes we forget how far we have come as we compare ourselves to others. Keep your soul and your chin up hun, keep strong and keep up the informative posts – i’m happy to read your rambles 😉

    Liked by 1 person

    • Thanks for the comment, made me smile 🙂 I’ve found facebook groups can be more negative in groups made for anything than message boards and forums and so many pop up all the time for everything I’m not sure I’d have the time to sort through them all to find the good ones. There are a couple of them I’m a member of due to recommendations but I don’t think I’ve checked them for a while.

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  2. Thanks for sharing your thoughts, people have told me why not join a forum to be able to share with “peers” i tried it, and i get what you mean, for me it worked, against me, people would try to lift me up when i was down ( read un able to get out of bed) and then when i had a bit more energy, i had the feeling i should inspire and lift up people, but, with the tiniest bit of energy i always want to spent it for my nine year old, i just wrote about it in my latest post.

    I just came out the closet about it, would appreciate if you take a look, and tell me what you think.

    I do need support so many, almost all people , don’t get it, but lots of times i cant give back. I have got strangers ( volunteers) via workaway that help to keep my family going, they are living in my house see me and even they don’t get it.

    But i have got the opposite, one time this dutch girl asked me if i wasn’t jealous of here going to the beautiful city near we live ( while i had to stay in bed) Granada and that she is able to spend so much time with my son all.

    And i told her that even though it stings I’m so happy if people enjoy themselves and live life to the fullest you never know if you might end up like me.

    I did feel unwritten laws on the forums i think thats why i quiet going, and its probably just me and I’m happy if people do find there solace there, I’m trying to find some trough my blog now, on FB they are ruthless, very scary how ” best friends drop you because of letting the FBworld know how bad your doing. Thanks again for sharing,

    You inspired me!!
    hope you don’t mind me getting into it this long, and hope you read my post, next one will be about the Spoonies hoping if someone will be enlightened about our state of being. I hope your ” well”

    A gentle hug Steffie

    Liked by 1 person

    • Thanks for reading and replying, the reply made me smile 🙂 Sorry to hear about your friend on facebook, I lost a lot of my school friends when I was first ill as no one seems to quite know how to react or what to do when you tell them or you suddenly don’t have the energy to go out or reply to them all the time.

      I know what you mean about the unwritten rules of forums; there are always people who have been there longer who seem to know the rules and I always seemed a bit out of the loop with them. I have found some wonderful people on forums but surprisingly the ones who have ME that I’ve kept in contact with were from forums that had nothing to do with it, fan groups for other things. It’s hard when no one around seems to get how it feels, I have to live with my parents at the moment because of it and even though they’ve known me all my life sometimes they don’t seem to get that I can’t do things on a good day if I look up to it because the next three days will end up as bad days.

      I think finding people online does make it easier, at least you have someone to talk to and there’s quite a few blogs written by people with ME, I think chronic and invisible illnesses are becoming more talked about because of online communities as well. I read your blog and really like it, I’ll read it some more tomorrow when I have more energy 🙂 This reply ended up getting longer than I meant it to! Hope you’re as well as possible 🙂

      Liked by 1 person

  3. Reblogged this on Maya's life in short and commented:
    Very true, I’ve found this as well in a lot of facebook ME groups and have left them because it felt like a symptoms competition or just generally depressing (sorry if the latter comment is harsh, but I believe that people with ME have the right and ability to be happy too). I guess when we’re really ill and feeling awful we just need to express how shit life feels in that moment to keep some sort of sanity and havent got the energy to filter it or make it sound hippy happy and constructive. As a result it can be hard to strike the balance between venting to get our difficulties acknowledged / getting support, and creating or maintaining a positive outlook, regardless of where we are at any given point. While there’s no way we can always get it right (and we all need to vent sometimes!) I think it’s important to try on our better days, so that it becomes more natural. Otherwise we’d all turn from ‘ME myself and I’ to into ‘miserable ME, moaning about Myself and loathing I’.

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  4. I’ve written quite a bit about competition. It’s one of my pet peeves. I think it’s really, really hard to focus on your own path when there are others around you constantly trying to outdo or one-up you. This is why I have had to sometimes remove myself from FB. I don’t check it that often. I think in general we all want to be happy for other people, especially after they’ve achieved great things. But, when you’re barely able to pull yourself up and succeed at what you want to do, it’s tough to not get depressed when others seem to be doing so much better. At least this is how I see competition being harmful, is when it distracts us from our own path. I don’t what the solution is because I still struggle with how to deal with competitive people. I try to do my best and in that way I compete with myself. But, I am not in a race with anyone else. Good post & keep up the great work.

    Liked by 1 person

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