Jeff has a great blog. It ish helpful to me. I bet that it is helpful to Jeff. I bet that a lot of people find it useful.
Do you folks blog?
What do you think about blogging about the TBI? BTW I mean having your own website to blog on.
Is it better to keep it a secret from the public? Is it bette to keep it private from insurance companies? Is it helpful to de-mystify the whole thing? Have you had good or bad experiences with it?
All feedback appreciated whether your blog or not because this is more about survivor transparency and recovery and risk-management than blogging specifically. Oh well you get my point lol.
Hey Occipital,
Interesting subject and a few differing opinions I’m sure. Being that I have previously worked with many different people with TBI for over 10+ yrs and then to have my own experiences to add to this, my knowledge has many facets. So, first off, I’m going to start with me.
As a young child I was involved in an MVA. Symptoms were not diagnosed and it was all put down to psych. “He’s loopie…” “he’s a hypochondriac…” “…Those things he’s complaining about can’t be happening…”. I was sent to see social workers and psychiatrists. One social worker gave me a diary to keep, which I noted things in daily. One day somebody (parental)read my diary without my approval. They were less than happy with what was contained and I received a severe beating. I have never kept such a diary since. Sure I’ve kept a work diary and even a pain diary/activity diary but never a personal diary since. So a blog concerns me. Exposing my inner thoughts? Never again.
I have had 2 former clients that I am aware of who blogged. One who used it as a networking tool, with great success. She had muscular dystrophy and was wheelchair bound and regularly needed to be connected to a ventilator for breathing. She had minimal social contact and her blog was her way of connecting with the outside world.
The other client could be rather confrontational in their interactions with others on their blog and the results got to be rather messy both for them and others around them.
HELL YEA, Insurance companies have a notorious tendency to use any ammunition they can against clients and I mean ANY. So, one day you’re having a bad day and write something defamatory, maybe something about a dr. Not with malice, just venting (as we all do). The consequences can be awful. My insurance company initially was underpaying me, when I queried them, they instantly became confrontational. I was/am in no fit state to deal with bureaucratic $%#^&, so I got the lawyers involved. This was the best thing I could have done. Sure it cost, but the lawyers dealt with it all.
I have heard of some VERY nasty dealings with these companies, so I’m very aware. I never use my name online, only a pseudonym and never write things that are identifiable. If you do have an online presence, you need to be safe. Safe both now and tomorrow ie people may write about awful experiences with a dr today, then in 5yrs time get referred to another dr who does a quick search, only to find those comments. People need to beware once written, those comments are there forever. This online world can be a scary, risky place and in some regards, rightly so. Just be aware.