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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I live in fear

Denise

Senior Member
Messages
1,095
Some ME(cfs) community members feel their voice is constantly threatened from within the community. This post (http://speakupaboutme.wordpress.com/2013/10/13/crimes-criminals-and-the-need-for-justice/) helped remind people that those of us in the ME(cfs) community are not “the enemy”. That reminder prompted one patient to ask that the following be posted:


“I live in fear – all day every day.

It shouldn't be this way but it is.

I live in fear of the long-term effects of ME/CFS and of being so severely sick starting at such a young age.

But this is not my only fear.

I live in fear of not being appropriately treated for my illness (or for additional illnesses) by medical professionals who disbelieve me and belittle me if I reveal that I have ME/CFS.

But this is not my only fear.

I live in fear of people finding out that I have ME/CFS and belittling the significance/severity/impact of ME/CFS.

But this is not my only fear.

With so much fear in my daily life, I would like to feel I get support within the ME/CFS community. ...."


The rest of the post is here:
http://speakupaboutme.wordpress.com/2013/10/28/i-live-in-fear/
 

SOC

Senior Member
Messages
7,849
This is really sad. Where is this happening? I haven't felt anything but solid support from the community here at PR.
 

Denise

Senior Member
Messages
1,095
This is really sad. Where is this happening? I haven't felt anything but solid support from the community here at PR.

I am not sure that where it is happening is important.


I do know that it certainly happens all too often on forums, blogs, email threads, etc. It happens publicly as well as privately.


What does matter is that there are significant numbers of people don't feel comfortable expressing any views if their views do not coincide with the most vociferous ones.


What does matter is that people feel intimidated/overwhelmed by the vitriol and that silences them and makes them unwilling to participate in advocacy (or discussion) for fear of being bashed.

Since the post went up I have have heard (privately in most cases) from many more people who also live in fear for the same reasons as the author of the post.

I hope we can encourage our community to listen with the goal of understanding points of view.


I hope we can focus on the larger goals and nurture advocates so that we can share the load and get more done.