If we keep pushing and come forward about this issue we will win.
Ya was really great to see this today. The tide is beginning to turn.
Pretty good to see this mentioned by someone with such a big social media presence and to see so many reply with frank accounts of their experience.
This is quite a big “drip” in the drip, drip, drip of building pressure. Or a bigger one than I can remember on twitter, at least.
You really need to stop demoralising people here. We need to encourage people to reach out for fundraising and awareness raising. Messages such as these do not help.
Telling people here no one cares about us is both false and demoralising.
I have filled out the post drug syndrome survey.
You should not be venting constantly in your posts. Saying most people don’t care is not helpful or even necessarily accurate. You should be encouraging people to speak out and take action to get ourselves out of this mess. The wider world will care when we step forward and present our stories. Instead of saying people don’t care. It’s counter productive. Ask yourself what is going to get us out of this mess sooner and then do those things.
Let’s encourage people to do podcasts, write publicly about this condition, do gofundmes and more generally just step out of the shadows. If we do that then people will care about this condition.
Yes I know this subreddit experience. This hunting of PFS sufferers is really best support to the PFS it’s all in your head campaign if the pharmaceutical industry and the majority of the common medical community.
So here we need solidarity! The last time ofen people want to suppress other victims meaning. I have been censored by new members too, that my posts are not helpful. Than all the members who suffer hard don’t talk about their state anymore, because they think it’s not helpful, so I have to suffer quiet and alone.
We need engagement and positive attitude, but it must be a place where people can talk about their suffering too. PFS is no county club!
Let’s stay constructive, everyone!
My intention isn’t to lash out at you nor convey any ill will towards you. I am just offering my opinion.
When a major public figure acknowledges the validity of our condition it should be cause for celebration. People suffering from this condition badly need morale boosts every once in a while. This should count as such. It doesn’t make sense to dampen spirits by saying most people do not care in the context of such news.
I would also push back on the idea that most do not care. Have you had in-depth conversations with most people to ascertain whether they care? Have you put your story forth publicly, written an article on medium like Marc Turner did, or done something similar to ensure your interlocutor fully understands the situation?
If people think most people outside of our community do not care they will be less inclined to take action and come forward with their stories. This is extremely bad for our community when we need to go public with this condition. The outside world WILL care if we come forward and present the human suffering. Just look at how successful the Network has been in raising awareness. This is directly attributable to patients stepping forward and telling their story, and organising proactively.
We don’t need a time machine. We need proactivity from our community and an attitude that through scientific research we can find viable therapeutics/cure.
Thanks for linking me the survey!
Personality and behaviour is effected in many with pfs because of the drop in neurosteroids. I’ve said and done many things I regret because of this fucking poison. Be kind to each other and make allowances
I personally think it’s great that a celebrity medical professional name-dropped PFS and PSSD without proclaiming to have a full understanding of that which isn’t fully understood yet.
Now that medical condition that no one has ever heard of that crazy/lazy cousin Davey claims to have has been mentioned by a celebrity doctor and friends and family start thinking he might not be so crazy/lazy after all. They begin caring.
I just deleted my post.
Dr. Drew has been a lucky news…
Sometimes I feel so sad about our shit Situation that I have to write here to go not totally insane in my mind.
Only you all here can feel like I feel my self with this fucked off body and brain and no manhood anymore .
Was that tweet deleted ? I can’t find it on Dr Drew’s twitter page.
I just checked and it’s still there
I’m willing to do whatever to get us out of this madness. Fundraising, podcast, article writing. Whatever. Nothing is more important. We CAN get out of this mess. It is curable. We just have to push as a community. We will get there.
Thanks for the reply,
Can you post a direct link to his tweet ?