I’ve been reading through the family forum, and I’m flattered that it appears that @SzAdmin has referenced some of my postings, specifically about the dna testing I shared.
I was thinking it would be nice to ‘collaborate’ with these poor family members in the family forum ourselves, although it would be a draining exercise I think because it seems that
a) the family members on the forum have sz children in their lives who are either off medications or need to goto the hospital and
b) they’re ‘sz’ family members are also using illegal drugs and terrorizing their family with other issues not related to sz
I feel like I have been ‘shutdown’ in the past when trying to respond to family members in the forum, either I don’t belong in the family forum, or the family doesn’t belong here in this forum. I find that quite frustrating. What is the recommended way to converse on ‘family’ related issues then? @Minnii or @SzAdmin maybe you can answer this one, and I felt like I was ‘shut down’ and sent to my room in the 'sz forum hospital ’ regarding this issue just last week.
But, if you’re going to quote me verbatim in the family forum, perhaps I should also participate there?
There were a lot of people saying mean things to the family members, and being total jerks. Things like blaming the family members for their loved one’s sickness. Eventually, the decision was made to separate our groups so no one gets attackied.
I was reading one thread that had to do with ‘what have we studied?’, and it seems that many of us are well educated people with a psychotic illness, like schizophrenia, or many of us on this forum have learned to manage the psychosis part.
I don’t get the impression we have very many meth users , do you? I see that as 2 separate issues, drug/alcohol abuse and Sz. Ive heard that drugs, pot, can cause psychosis, but that is not the disease Sz.
I think folks with any mental health issue are at higher risk for alcohol/drug abuse. It’s impossible to separate them from each other. Each one feeds into the other.
I don’t particularly appreciate the separation between the two forums. I think it is manifest in both forums that there are quite some misunderstandings on both sides of the fence. Caregivers not understanding their loved ones, patients not understanding their caregivers. I don’t think this is going to improve by not talking to each other as a group, and I do think that communication between the two groups can help such matters. But yeah there have been some issues with people being rude to each other from both sides, so I understand.
right, this was my point exactly. I wish the family and the patient communicated better. Separation isn’t really going to help communication.
Like I forwarded this sight to my daughter, didn’t know there was a family forum. I talk to one of my daughters , but not the other. The daughter I don’t have a great relationship with sounds like some of the family members in the family forum.
I am happier now that family and diagnosed aren’t mixed. I’m here for peer support. It might be appropriate to have a single forum where the two mix, but it is my fervent hope it will be done on the Family side of things.
Its hard to mix the two. The #1 goal of these forums is first and foremost for people to get the peer support they need.
Mutual understanding of the the family members of the patient’s perspective and vise versa is helpful - but I tend to generally think most of that can be achieved via just reading the different forums.
The issue that arises when one group gets too involved in the other group is that we’ve noticed that it tends to shut down the conversation in the forum where the other group is participating. In the family forum for example - before we had them on this new forum software - the discussion activity was very busy and we had dozens of regular contributors and lots of conversation. Then we merged the discussion forums so in this new software everyone was shown everyone’s messages - and we very quickly saw the discussions in the family forum go down to zero. The issue was that since it “felt” like the diagnosed people were reading and commenting on a lot of the family forum messages (and some of the messages were critical of the parents) it quickly stopped feeling like a support forum and so people just stopped posting.
Since we’ve separated the forums we are again seeing significant activity in the family forum and lots of good support. So for now I want to keep it that way.
Ideally I agree we’d have a third forum where diagnosed and Family could discuss things of mutual interest - but each of these forums costs us $100 a month and with limited income on the site its hard to justify such a large expense.
but i am glad we have separated the forums like we have because i dont think it is appropriate that we reply to some of their threads bc we shouldn’t be judging them or scrutinising them,
the family members can discuss sensitive issues in the comfort of people who can relate best with them (other family members), they are in a really bad position when their children get diagnosed and they dont know what to do, a lot of the times they are in the dark and they need support.
$100 a month? I thought this was affiliated with the NIMH? This is discouraging, a lot of useful information is presented here for researchers in a ‘free’ format; I would hope that more funds could be found to support this type of collaboration .
as for what I said about information technology jobs; this is exactly the problem. This costs only $100 a month?
I believe that’s per forum (Family and DX’d). So, $200/mth or $2400/year. That’s a lot of money to go out of pocket to have people like @StarryNight slag you non-stop.
Don’t forget what there are many folks putting in countless hours as volunteers to keep this site up and running.
I have said this before, but I have found this to be the best managed and maintained mental health forum that I have come across. It is also a very busy forum with a high volume of members which really underscores how valuable this forum is as a resource for folks.
So, a big thank you to @SzAdmin (and other volunteers) for providing this forum as a resource.
Yes - that is correct. And we really don’t have the money to bump it up to $300/month ($3,600 a year) for a mixed forum that would be only where family and diagnosed converse.
We get no money from any outside organizations. Advertising sometimes covers the costs, but for most of the time over the past 5 years it hasn’t.