(no subject)
For some te I have been toying with an idea. I'm not sure how to exactly describe it, but I suppose a 'shared experience blog' would best describe it.
Just now, I was referred to this disgusting article, written by someone with ME (I will not question the validity of her illness experience, as it is her invalidating that has made me so cross in the first place) which, whilst I can understand some of her viewpoints, and even agree with some of her 'tips' the execution of her 'advice' is downright offensive.
My idea has been to create a blog, with an attached community, which tackles the issues surrounding ME in a virtual 'safe space'. I realise there are plenty of forums and communities out there which afford a meeting place for PwME, and I do not intend to devalue them, because this would be different. Too often I feel that forums are great for the general chit chat, to ask questions and tips, but rarely do the discussions there scratch the surface. There are other ME awareness and research groups which post blogs on current research and news items, but I personally find these to be rather dry, and often difficult to read when I am suffering with brainfog. Although my research has not been exhaustive, I have yet to find anything that has met all the criteria I am looking for in a blogging project.
So this blog would be one of articles on various subjects and issues relating to and about ME, peppered with shared experiences from guest bloggers to create a blog which can be ultimatey described as 'by sufferers, for sufferers'. It would be something of a resource, perhaps not something one would read regularly (certainly not those who are old hat at having ME), but may be a good starting point for the nwly diagnosed, and people genuinely wanting to learn more without being weighed down in academia.
I have been thinking about this, admittedly, since 2006 when I completed a successful research project on how people with ME discursively construct their illness experience, and the main finding was that people wanted an arena to discuss their illness experiences however they wanted to without the fear of being delegitimised or invalidated through questioning and denial from others.
The biggest issue sufferers face is invisibility. Those who are severely ill remain invisibly cloistered in their homes, those of us who are more moderately and mildly affected may choose to conceal illness in order to get a job, or to otherwise function in society whilst protecting ourselves from the criticism of those who don't understand. Every now and then a case such as darling Jessie's breaks through, and for a while there is some visibility for us. But it is short lived. Only the other week I had to explain to a colleague, a nurse of over 25 years, who did not know that ME can cause multisystemic failure, nor that it was neurological in nature. I myself refer to having 'CFS' for a quiet life. I chose to conceal by not using what I feel is the correct term, because I don't have the energy to answer the questions.
Not anymore.
This is for everyone, PwME and the unaffected alike. But it will be a safe space, where PwME sre able to share experiences for others to see. Negative opinions may be posted in comment, but these might be a good way to facilitate further discussion to deconstruct the myths - such as why PwME are often so competitive and/or judgemental of each other? In time, I hope to set up a forum to further enable discussion of posts and potential posts.
But I stress that I cannot do this alone. Whilst I intend to write te lion's share of articles and share my own experience, this will not just be about me. I need other people to be willing to share, or to contribite articles on areas of their own particular interest - perhaps you have a particular symptom, or lifestyle, have othe illness(es), you have a carer, you work, you are a parent, you are an activist. Whatever you can contribute I can use it.
I want this to be big, but not your typical website. Websites are there to be read, this is there to be contributed to, expanded, and the pool of knowledge deepened. I have been following No Longer Quivering (a similarly structured blog for women who have left the patriarchal fundamentalist Christian movement known as 'Quiverful' and other patriarchal organisations) for some months now, and am keen to develop a similar resource for PwME. I hope that it is not seen as an impossible task - asking those who are surely so depleted in energy to contribute to such a project, but I do hope that others may feel the same as me and would want to further the cause, increase visibility and perhaps begin to make more sense of their own experience in the process.
I am tentatively thinking of calling it "Reclaiming Visibility", any other suggestions and thoughts gratefully received. On the whole idea, not just the name.
I have left this post unlocked so that it can be linked to for all to see. You can comment anonymously if you would like, but please do share your thoughts with me. Is this a crazy endeavour, or is it something that might help to further the cause? I don't expect to take the world by storm, but I'd like to do my part, just a little bit, if I can.
Just now, I was referred to this disgusting article, written by someone with ME (I will not question the validity of her illness experience, as it is her invalidating that has made me so cross in the first place) which, whilst I can understand some of her viewpoints, and even agree with some of her 'tips' the execution of her 'advice' is downright offensive.
My idea has been to create a blog, with an attached community, which tackles the issues surrounding ME in a virtual 'safe space'. I realise there are plenty of forums and communities out there which afford a meeting place for PwME, and I do not intend to devalue them, because this would be different. Too often I feel that forums are great for the general chit chat, to ask questions and tips, but rarely do the discussions there scratch the surface. There are other ME awareness and research groups which post blogs on current research and news items, but I personally find these to be rather dry, and often difficult to read when I am suffering with brainfog. Although my research has not been exhaustive, I have yet to find anything that has met all the criteria I am looking for in a blogging project.
So this blog would be one of articles on various subjects and issues relating to and about ME, peppered with shared experiences from guest bloggers to create a blog which can be ultimatey described as 'by sufferers, for sufferers'. It would be something of a resource, perhaps not something one would read regularly (certainly not those who are old hat at having ME), but may be a good starting point for the nwly diagnosed, and people genuinely wanting to learn more without being weighed down in academia.
I have been thinking about this, admittedly, since 2006 when I completed a successful research project on how people with ME discursively construct their illness experience, and the main finding was that people wanted an arena to discuss their illness experiences however they wanted to without the fear of being delegitimised or invalidated through questioning and denial from others.
The biggest issue sufferers face is invisibility. Those who are severely ill remain invisibly cloistered in their homes, those of us who are more moderately and mildly affected may choose to conceal illness in order to get a job, or to otherwise function in society whilst protecting ourselves from the criticism of those who don't understand. Every now and then a case such as darling Jessie's breaks through, and for a while there is some visibility for us. But it is short lived. Only the other week I had to explain to a colleague, a nurse of over 25 years, who did not know that ME can cause multisystemic failure, nor that it was neurological in nature. I myself refer to having 'CFS' for a quiet life. I chose to conceal by not using what I feel is the correct term, because I don't have the energy to answer the questions.
Not anymore.
This is for everyone, PwME and the unaffected alike. But it will be a safe space, where PwME sre able to share experiences for others to see. Negative opinions may be posted in comment, but these might be a good way to facilitate further discussion to deconstruct the myths - such as why PwME are often so competitive and/or judgemental of each other? In time, I hope to set up a forum to further enable discussion of posts and potential posts.
But I stress that I cannot do this alone. Whilst I intend to write te lion's share of articles and share my own experience, this will not just be about me. I need other people to be willing to share, or to contribite articles on areas of their own particular interest - perhaps you have a particular symptom, or lifestyle, have othe illness(es), you have a carer, you work, you are a parent, you are an activist. Whatever you can contribute I can use it.
I want this to be big, but not your typical website. Websites are there to be read, this is there to be contributed to, expanded, and the pool of knowledge deepened. I have been following No Longer Quivering (a similarly structured blog for women who have left the patriarchal fundamentalist Christian movement known as 'Quiverful' and other patriarchal organisations) for some months now, and am keen to develop a similar resource for PwME. I hope that it is not seen as an impossible task - asking those who are surely so depleted in energy to contribute to such a project, but I do hope that others may feel the same as me and would want to further the cause, increase visibility and perhaps begin to make more sense of their own experience in the process.
I am tentatively thinking of calling it "Reclaiming Visibility", any other suggestions and thoughts gratefully received. On the whole idea, not just the name.
I have left this post unlocked so that it can be linked to for all to see. You can comment anonymously if you would like, but please do share your thoughts with me. Is this a crazy endeavour, or is it something that might help to further the cause? I don't expect to take the world by storm, but I'd like to do my part, just a little bit, if I can.