I live in fear

(Permission to share)

 

Some ME(cfs) community members feel their voice is constantly threatened from within the community. This post (https://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.

Yet even within the ME/CFS community

I live in fear.

I live in fear of adding my voice within the community.

I live in fear that if my views aren’t as outspoken as the views of others I will get shouted down – this is often done publicly, loudly, and vehemently.

I live in fear that I will be denounced by those who say (or imply) that any view that differs from theirs is worthless, is shameful and makes me an enemy.

I live in fear of getting involved – even though the community needs all the help it can get – because my voice will not be valued or respected, or even heard above the clamor of those who proclaim theirs is the one true voice.

I am not alone….

How many others are there like me in our community, who live in fear?

How many others are there who, like me, fear giving voice to their views?

How many others are there who, like me, fear getting involved in advocacy because they will be labeled, demeaned, belittled and demonized because of their views?”

We all want better lives for people with ME(cfs). We all deserve to be seen, to be heard and to be valued.

BUT

If only certain points of view are considered valid – we shut out many voices.

If we shut out many voices and viewpoints, we are also shutting out many potential advocates.

If we shut out many potential advocates, we limit the work we can do.

In supporting each other, in listening to and respecting differing views, more people will work with us because they feel respected, supported and valued.

With more people working with us, we can get more done.

With more people working with us, sharing the work that needs to be done, we might even have a little bit of energy left over at the end of the day. Wouldn’t that be nice?