General Why Is This Great Site Not Known By "Experts"?

[horizons]

I spent 12 months researching PTSD via internet, counsellors, doctor, colleagues etc etc. At NO point did anyone recommend this site. And for whatever reason, I didn't notice it in google until I typed in PTSD Carer one day - and I still don't know what made me do that...the word carer has odd connotations to me ....

Worst of all, I recently phoned the Trauma Stress Centre in Sydney (I wanted to find a face to face support group) and was given a heap of GENERAL support group referrals. No there are no specific PTSD support groups. I could try Anxiety Australia. I stated my disappointment that they did not mention this site and told them it has a wealth of information and connection opportunities for anyone who has PTSD or is involved with a person with PTSD. I just got a disinterested "oh okay".

grrrrrrr If i had found this site 12 months ago I would not have had the feeling of isolation, because as you all know, the ordinary person has NO clue what you're on about when trying to discuss what's going on. (Let's face it, in my experience most therapists and doctors still don't have a clue)

What's the answer to this? To me this site should be accessible - that means it goes on every doctor and psychologist's list of PTSD referrals ! Do professionals need to be more educated about resources?

 

[anni]

Ha! Hi, also! :)

Yes, I understand your frustration. Since I'm not a professional, I'll leave it to one of them to answer your specific question but wished to say that the lack of some cohesive PTSD resource seems to be a common theme.

I can see why therapists, etc. would be wary of recommending websites as resources for healing to their patients given the plethora of junk sites out there. Having said that, I agree with you completely that this particular site is an beautifully sound format for the disorder and should be implemented as such. I'd certainly never heard of it either, and found it on my own from a Google search.

I don't know what it's like in other countries, but here in the US we're still in the Dark Ages concerning brain disorders and societal perspectives. It's just not considered a priority for host of reasons,which tends to result in a lack of funding-hence interest, basically. One would have hoped that with so many of our military, as a result of the wars in Iraq and Afghanistan, now requiring treatment for combat PTSD the norms would be slowly changing but this doesn't seem to be the case.

Hopefully you'll hear from an actual professional on this, and not just an annoyed and rapidly aging foum member on the proverbial soap box. :)

Anni

 

[horizons]

I've just finished an email to both my and my partners therapists. Time to educate them. This site would have saved me months of confusion!

 

[Artista]

I don't know... I do know that my therapist does not frequent forums for a good reason! She found that other therapists were referring too much to cases and confidentiality was often in breech. She doesn't use e-mails even as a means of contacting any client for that reason. Just to ensure i am safe with her and none of what we discuss or say will get out elsewhere. I appreciated this right from the get-go! I have not had any privacy on my computer, so this hit home to me.

So I am unsure if this is possibly one reason why????? There are certainly bad sites that give others the stigma I am sure. She never told me not to try a site. I think when she explained to me why she does not e-mail and my past, I completely understood. I typically avoid computers in general because I have found nothing to be private should someone want to pry!

 

[Deleted member 1860]

Do professionals need to be more educated about resources?

In a word, YES. I have found that there isn't really a known "network" of resources. It seems that (at least here) professionals are operating independently and don't really have connections with each other. I went to a top psychiatric hospital here in the states that has a well known trauma unit (I live nearby). Many professionals perform their post-doc in this trauma unit and then go on to private practice outside the hospital. There is NO referral system in place whereby the hospital can recommend former post-docs for counseling services. I had to go on an all out internet hunt for psychologists who had their training at this hospital, which was not an easy task. I don't understand WHY there is no network, as the hospital has a specific person who does outreach services for outpatient care. (And yes, I tried to work through the outreach coordinator, but in the end, it was pointless).

I think a big part of the frustration lies in the fact that PTSD resources are not easy to come by, and this problem is confounded by the absence of any sort of resource network. I know for me, half of the battle was in just finding SOMEONE who had the proper trauma training who could counsel me.

 

[horizons]

Hi Artista, thank you, your therapist's opinion is interesting. I know cyberworld has its privacy issues, and people do need to be aware of that. My feelings are that this particular site creates choices in that regard. The use of a user name and the option to post in a private thread gives confidentiality when desired.

Besides the option to participate in the forums, I've found this site to have the clearest , least stigmatised, most informative information about PTSD anywhere on the internet. That's after 12 months of reading through generalised, and often conflicting information including research studies and specialist opinions.

Whilst I know that the treatment of PTSD can be complex and that a lot of research is still going on, there is no doubt from this site that many of the symptoms and feelings are similar - certainly in terms of 'typical' behavioural patterns. I am well aware that therapists lie somewhere between diagnosing PTSD too easily and missing it altogether because of its complexities. They may be fearful that clients will be steered away from recommended treatments through negative forum posts about one treatment or another. However, my argument to that thought would be I have not come across one post here that states categorically to choose one treatment over another. In fact quite the opposite - people are merely relaying their experiences and telling it like it is. It provides informed choices for both sufferers and carers from an experiential point of view.

I asked one professional in the emergency service my partner works for why they did not have an internal support group. The answer shocked me. The organisation does not want an 'epidemic' of employees claiming they have PTSD, so they keep it all quiet. Unbelievable. That fear stems from doctors and therapists over diagnosing PTSD and fear of consequent workers compensation claims. The dollar rules over the human experience.

ScaredOfLonely's comment that a big part of the frustration lies in the fact that PTSD resources are not easy to come by and that there is no resource network is the most concerning of all - does that alone not exacerbate PTSD symptoms? Frustration? As a carer I was getting mega stressed and started having feelings of hopelessness that no-one else seemed to be experiencing any of this, and that all the information was conflicting ! So how on earth do sufferers cope with the search for support?

Anni, thanks for your input too which refers to a plethora of junk sites. Isn't it up to the therapists to check these sites out and make informed decisions about the validity of the site prior to referral? This site clearly refers to current clinical guidelines in terms of what diagnosed PTSD is and is not. There is no specific treatment recommendation, only a range of options which therapists use, so no therapist could argue that it recommends incorrect treatment.

The unique aspect of this particular forum is also the communication between sufferers and carers. It is a rock solid community of caring. A safety net for both sufferers and carers in so many ways. So much better than what my doctor gave me a few months ago when I relayed my experiences and fear of depression as a result of watching my partner inexplicably removing himself from me. He had already been diagnosed with PTSD. But my doctor had NO clue what some of the patterns were. The problem to him was a relationship one. And the solution was a script for Serepax. I never filled the script. The solution for me came in the form of this forum.

Understanding. Empathy. Acceptance, Kinship

Those things make a seemingly impossible journey something a little more bearable.

I wonder if it's simply lack of time - after all, doctors and therapists are busy and have many illnesses to deal with.

Anthony, I'm presuming you've let professionals know about this site? Could you please give your input to this thread about your experience with reactions from professionals?

 

[Artista]

Good points! And although I am new here... I have found it a wealth of information and to feel "genuine". That is the best part! I would certainly rate this site best i have found as useful!!

 

[Nicolette]

At NO point did anyone recommend this site.

It is actually referenced in the book 'PTSD For Dummies'. You would also have to appreciate that some 'specialists' would be unlikely to refer someone to a 'free resource' for their own benefit and really don't appreciate the situation unless they themselves have first hand experience. For me, reading information about PTSD had little impact until I had to deal with the reality.

I've just finished an email to both my and my partners therapists. Time to educate them. This site would have saved me months of confusion!

First hand experience with this type of tactic has had little impact to those whom I have suggested this to including my own sister who has CPTSD and professionals with the exception of our GP of all people. Anyone you approach has to WANT to try something different and a lot of us are creatures of habit until faced with something which forces us to resort to other means as all the normal resources have failed.

 

[Grama-Herc]

Anni,

While I realize that paranoia is a big of part of ptsd, and I am sure you were not referring to me when you referrenced the annoyed and rapidly aging forum member on the proverbial soap box, I still take offense. Just exactly what prompted that statement? We don't do anything more than share experiences that we have had and told of things that worked or didn't works for us.

Whether you want to believe it or not, just discussing ptsd with someone who knows what it is like IS therapy for many of us. I think your statement I refered to was very rude, but then that is just my humble opinion.

 

[catjudo]

I could be wrong, but when I read Anni's statement I took it as her referring to (and poking fun at) herself. I'm sure she didn't intend to upset anyone.

 

[amethist]

I had the same feeling from Annie's post catjudo, being the same age as me, it made me chuckle when I read it the first time.

 

[ISupportHer]

I can't remember where I saw it but I do remember seeing something on some site that some professionals don't recommend forums because of the possibility of someone taking advice from someone who is not a mental health professional and thus get bad advice.

My opinion is that the forum is such a GOOD resource. The ability to talk with others with similar circumstances, etc. I do think that one has to remember that we are talking to one another but not a Psychologist or anything, but that doesn't mean that the forum is not beneficial.

ISH