There are many great advocacy groups out there and then their are the few who want to be great but will sadly do more harm than good.
I was recently invited to join one because I have been an active advocate for Osteonecrosis for almost 6 years now.
And over those 6 years spoke to thousands of doctors – a few pro baseball players that developed Avn-on etc… so I do have a lot of knowledge on the subject and great resources.
It was against my better judgement to join but I thought ok I will give them a few tools and share my info with them to help them, then eventually step out of their group because I am very busy with my own advocacy work.
Well I joined yesterday after I was invited and when I was reading the posts on this new group page that was just 1-2 days old I was shocked to see all the copyright infringements.
My stuff pictures from my booklet and web site that I took the time to make and write about , all the research I did.
So I made a comment on how important for a group it is to create your own logos and ask before just using copyright work.
As some was my work and some were others that I know would not be happy with it being used without asking.
If they asked I may have said ok or I may not have.
Most of my things have the copy write and hidden watermarks on it.
I then was going to dinner and advised this group I would post a lot of info later that night.
When I went to post some really good info I found in my hundreds of files , I was removed from this public group and then am continually publicly bullied !
It’s a public group and I am the topic of their discussion for 2 days now .. Maybe they will get tired and eventually start advocating. Hopefully they aren’t one of these groups that talks about money all the time. Most advocates don’t do that.
I have to laugh because clearly these people have no idea that advocacy is about being leaders , patients having patience and instead it turned into a let’s pick on the chic we invited now that she is no longer in group we can talk about her and call her names .
I am shocked at the childish behavior by some people. Well most of leaders or so called leaders of this group.
Anyone who is in their groups better be prepared for drama town.
Thankfully I have a thick skin.
I am far better off without this group in my life. In fact they asked me to join or I never would have know they existed.
I’m a happy advocate, I work hard everyday at my advocacy and I get stuff done.
I don’t sit around waiting for others to do the work for me.
I create my logos and write my blogs I interview doctors- patients- leaders in community, elected officials etc…..
Everything I do and everything you see like my booklet – and the doctor directory I made for USA and and the International one I am and have been working on.
It is there because of all my hour’s of calls, notes and dedication.
I am proud to be the advocate I am and those who don’t like it can move on….
I am far better off with out you.
However many patients who may join that group may fall prey to their bullying and I feel sorry for them.
Because they may be newly diagnosed and just stumble on this group.
If you need a good advocacy group for your Avn drama free I have one.
We love our members and we have fun and educate : if your a bully you are not welcome and if you are in and bully someone you get a warning to be nice because we are all suffering with the same condition. If it happens again they are removed.
Not only does bullying and aggressive behavior create a difficult and hostile environment, it isolates people from getting the support they need.
Be constructive not destructive
If you bullies spent less time copying my stuff and talking about me and made your own your have a lot accomplished by now.
I am hoping they stop messaging me calling me awful names , swearing at me, men and women alike and please stop asking me for all my copyright stuff.
I know what I have and I know all my copyrights and publications are legit.
There is a thing it’s called research
Look it up!!!
All my stuff is copyright protected or permission maybe given but rarely and resources noted.
Why do slackers and bullies feel the need to just use other people’s art and print published copy for their benefit?
I help everyone and I am proud of that.
Being an advocate requires work and kindness.
Also to patients you should never pay for being part of an advocacy group.
You should never have to pay for anything and don’t be guilted into sob stories asking for money or items.
If you have Avn and need a group a good group that I promise will respect you and never ask you for anything to join check out.
Unfortunately I will be removing some members from my group , who are now in a moderator or leadership position in that specific bully group.
I hate to remove people from my support group.
But I feel so strongly about being kind to others that if you choose to be a leader of a group based on bullying I don’t think my group is a good fit for you.
If you feel that the group you chose to be a part of is not as you expected your welcome to join or return to ours.
I’m all for being involved in one or several support groups. But not groups formed and run on bullying and always asking for money. My group never requires or asks for money or donations.
If you need a support group that supports you link is below
You deserve to be treated kindly respectfully and not bullied when you are already suffering.
Real advocates are busy advocating and raising awareness not harassing advocates or members.
Wishing you a pain free day.