Nielk
Senior Member
- Messages
- 6,970
No, their voices are silent through their own choice.
I would think that members of a forum for patients suffering from a disabling disease would be more compassionate and understanding of other patients' experiences. We are not talking about healthy people here. Most advocates who are also advocates expend efforts many times beyond what they are capable and pay the price for it, yet they push forward because they believe they are doing important work - help patients get proper care and alleviate their pain.
Long time advocates also realize that there is stress involved with this type of work - many times the community does not agree and there are tensions. But, for an outsider to come in and terrorize in a very ugly and visible way some specific advocates - becomes too much for sick patients. There comes a point where health - as minimal as it is - has to come first.
In addition, the fact that some in he community are seemingly accepting of this type of bully behavior against our advocates adds to the atmosphere that these advocates are not important and are as @Valentijn stated dispensible (I wish they would disappear).
Maybe some of us would rather spend our time actually advocating for research, research money, government support, respect by doctors etc rather than wasting time on this issue.
Because it's impossible to do both? One cannot be an effective advocate and show compassion for other advocates who have been brutally harmed? They are stating that they have been harmed. They are stating that their health has been adversely affected by this. It is inconsequential whether you personally would have felt the same way. Where is the compassion?
There are so many threads on this forum where patients talk about how they feel. They talk about situations where they have been harmed and I am proud that PR members are so supportive and really help these patients. They listen to their problems and either try to give advice or just tell them they understand. They don't say i don't have time for this stupidity I need to advocate.
But in this situation, what I hear from members here is that they do not want to waste their precious time on this - moreover they are angry that this is even brought up. I am trying to understand why this coldness?