There are in my opinion several problems with ‘personal story videos’.
Forgive me if some of my points here are rather pessimistic, but I agree that there can be much more powerful ways to send our message to the world, that would actually reach the average joe, instead of those people who are already in our situation and community.
As mentioned by @nana123 public scrutiny is a big fear factor. Despite my willingness to contribute to public awareness I am also not quite mentally ready to ‘go public’ just out of the blue. I don’t want this disease to define me socially and destroy my life even further than it has.
I want to be seen as a productive person, not an indefinitely broken person, crying for help, even if I have legitimate cause to do so. Perhaps this is a cultural problem of our society, influenced by the perceived factors that socially define us as ‘men’.
Another problem with this is that you’re not really ‘standing in front of someone’ in a video these days.
I agree it’s a strong method to raise empathy by showing you are a real person of flesh and blood. But will they care enough to share the video? What can they really do to help? People will just click a video away if either:
- they can’t be arsed to empathize with someone they don’t know personally
- they care but are just completely lost on what to do to help
- it’s not presented well enough for them to stick around to the end of the video
When people could be watching funny videos or people telling happy stories, why would they spend their time watching sad stories? I know this is a huge oversimplification of video consumption in general but honestly ask yourself, what’s in it for the viewer really? Who watches this stuff to begin with? Doctors? Fellow sufferers? People concerned about whether taking certain pharmaceuticals is going to affect their health? People looking for pharma conspiracies? Certainly not your average joe unless one of our personal story videos happens to go viral on social media for whatever unlikely reason? And that’s a huge problem.
Also, these videos are too singular and too case specific, and rely too much on the quantity of stories. Even if a hundred people would make a personal video describing how these pharmaceuticals have destroyed their lives, we could still be written off as nutjobs and hypochondriacs, and our different symptoms would raise suspicion and confusion among specialists. I’ve already seen some of these people in their videos detailing their anger and suspicions towards Merck and all that. While I feel this is completely understandable, I think it further confuses the narrative we are really trying to promote, which is more genuine research and to reach out to ‘lurkers’ and those victims who haven’t figured out that their symptoms are caused by quitting these pharmaceuticals to begin with.
In my opinion, a personal video becomes too much of a debate whether our condition is real or not. If one or two doctors discredit your video then who will people prefer to believe? You or the doctor?
But here’s the thing:
To us, this isn’t a debate to begin with, we are not having an argument about whether our symptoms are physical or not. They simply are, they are not self-induced and we need other people to really get a glimpse of what that is really like with their own eyes.
If I were very cynical I would say you’d be better off showing your deformed genitals in public then just ‘telling your personal story’, because in the end we mean nothing to anyone except to our own friends and family, and it’s better to shake up the world with a good harsh dose of reality than dragging out our personal problems wishfully thinking that people will watch the entire story all the way to the end.
They’re also very unlikely to ‘spread the word’ because they are not in our situation. Most people are not just going to blindly repost a sad disease story, if there is nothing interesting or fascinating about that to any random viewer.
So my conclusion is:
Nobody is going to watch, because there’s nothing in it for the viewer.
I think it is worth telling our personal stories, but I think it would be better not to dwell on them for too long and focus more on reaching out to people who are suffering from the same things and have been ‘lurking’ here and there, just too scared to even join a forum or go to a doctor in the first place.
If I make a beautiful work of art that tells people about Finasteride and how we suffer chronically and how drastically it impacts our lives in the long term, that might reach much more people and serve as the leverage I need to overcome the stage fright by going public. Because at that point, I have contributed to society, something personal and hard-hitting, but still there is something to experience for the viewer too.
But yeah, easier said than done of course.