I am ready to speak out

General Discussion
#1

If you come across any journalist, documentary maker, TV program or podcast, I am ready to show face and speak out about my PFS.

5 Likes
#2

Hello Sir, will u plz fill out a member story and the survey !! We wan’t to know ur story.

1 Like
#3

You mean the survey?
I did with another profile 1.5 years back. Not sure if the data was saved

#4

I think this is great. At least from the perspective of dealing with the psychological pain this has caused us, speaking out and being public about this is empowering. I’ve done a lot of things in the shadows but TBH i have never had the courage to speak out about it publicly because I didn’t feel strong enough to face the stigma. I think this is real progress and I’m going to try to figure out how to be open about this too.

1 Like
#5

I think it is very important we start putting faces at the illness. People must know there are humans with their own particular story behind the numbers and the statistics.

1 Like
#6

Start with little things:

  • tell your family
  • tell your friends
  • talk on Facebook groups

Then

  • start speaking out as an advocate publicly for example onTwitter, but without talking about yourself
  • then start talking on a podcast, later video etc and become more and more open about taking about yourself.
#7

I spoke out on the medical errors podcast recently. It was very much freeing for me. I should have done it a lot earlier. I can only say that it had a very positive influence on myself. I can recommend it to everyone. I didn’t go into sexual details. Don’t think that’s necessary and I still need my borders

1 Like
#8

Indeed. I was working in Africa in a AIDS project 15 years ago. I lived there in a 30k inhabitants city. 25% had HIV, but no one knew anyone with HIV, as no one showed face. And as no one showed face the disease continued to spread as HIV stayed an abstract disease. We had 1 woman speaking out. She saved more lives than all our lectures combined…

2 Likes
#9

This is a good point. I’ve told very few friends and don’t really talk about it with my family. I feel like I want to heal myself first before going public. I"ve gotten involved in a lot of the politics which is somewhat empowering because you literally learn to work the system to get what you need.

1 Like
#10

I told my family AND my close friends, I felt everybody had to know the reasons of my downfall AND my poor life choices. Really felt a bit more relaxed after that, they seem to comprehend at least partially how I feel

1 Like
#11

I think we’ve seen enough stories on here about telling family and friends, they just don’t listen or think it’s serious. They’re just idiots.

#12

I’m lucky in that I had family that supported me through this. Unfortunately, they did keep me feeling sorry for myself a little too long until I decided it was up to me and me alone to do something for myself, which meant enduring pain and humiliation to build the best life I could irrespective of my PFS symptoms.