I mentioned on Checklists and Self-Help for Bipolar Disorder that I trust Psych Central. I don’t think I’ve written about my personal connection and experience with the owner of that website before. It was actually a very important part of my mental health journey, about 25 years ago.
Back then, soon after I was first diagnosed, I found some online discussion forums which were for people with mental health disorders. They were managed by John Grohol, who now hosts PsychCentral. Those forums have long since closed, but they were extremely helpful to me at the time, for three reasons:
First, the discussion forums were literally online support groups, open 24/7 to anyone anywhere in the world who spoke English and had access to the Internet. For me, being able to chill/chat with/hang out with other people with mental health disorders was very comforting and validating. I really needed that, at the time.
It was very hard for me to be me, back then, shortly after my diagnosis. The challenge level of being me was way higher than it had ever been before. I’d (accidentally) lost most of the normal human privileges most humans take for granted. That was a very real and very painful experience. On these forums I was able to talk with other people who knew how hard it was for me to be me because it was hard for them to be them, in a very similar way. They didn’t need to guess what I felt like inside or how hard it was; they knew because they were living through it too. I knew they knew and, as I said, that was extremely comforting and validating for me.
Back then, in the rest of my life – away from those forums – my sense was that most of my family, friends and other acquaintances had very little idea about how hard it was to be me. The people who cared the most were the also the ones most adversely affected themselves by my being ill. My illness had made me behave, and was still making me behave, in ways that were making their lives more complicated and difficult. Because of that, it was hard for them to see beyond their own struggle and/or care about how hard it might have been, at that time, for me to be me. I was probably angry with them about it at the time, which made it even harder for me to be me. Over time I came to see that they literally did not have much bandwidth at that time to think about how it was for me at all. We were all in ‘survival mode’.
Since we were all struggling, I felt it was extremely unfair that I was the only one under the microscope, being told to get treatment. I was made to feel like I was the only one who ‘needed fixing’; I was the problem everyone else needed to sort out. In reality I could see that there was a group dynamic happening in which people who might be presumed to be being supportive of me were too upset or scared to provide that support at that time. It was clear to me how unfair that was to me. It was actually unfair to them also, because their need for extra help at the same time as me went unnoticed. I noticed that it was not just about me – but there was nothing I could say or do about it at the time. I was considered too delusional and manic to listen to.
I was stuck with no choice and no voice. Any attempt by me to say ‘this is not just about me’ would have been interpreted as me not accepting my diagnosis. The consequences of having people think that were something I very much wanted to avoid. Partly because it was not true! But also because it would have led to me being trusted even less and having even fewer privileges. I had to just…wait some things out, even though patience is the last thing that people in manic states are supposed to have any of! I can’t express how hard this all was and what a high challenge level it was. I think the only thing that got me through was my stubborn determination. Which also – ironically – may have been somewhat responsible for me getting manic in the first place. At least there was an upside to it. Perhaps.
By the way I was looking up Bipolar research the other day and was pleased to find at least some practitioners now providing Family-Focused Therapy for Bipolar Disorder. This presumably means working together with both the caregivers and person with Bipolar to help address all of their needs. It seems like an excellent approach to me.
Ok, back to the forums and how they helped me.
Second, the forums provided unexpected validation in another way. In order for them to function as support groups they needed to be kept safe. But they were open to everyone and so from time to time people without mental health disorders would drop by and post unsafe or invalidating things. Some of the worst safety violators of those particular forums were Christians who dropped by to evangelize and/or opine that the people there were demon-possessed.
I started emailing John when I saw unsafe posts, asking him to delete them. After a while I think I asked him if I could have access to delete the posts myself. I was on them more than him and able to take care of unsafe posts in a timely manner, so that would make sense. He said yes. He gave me a set of keys, as it were. He trusted me at a time when very few other people did, due to my recent manic behavior.
John’s trust in me was incredibly validating, at a time when most people were very distrustful of me at best, and invalidating at worst. (As I have been saying). On the whole, the more time the people I was around ‘in real life’ had spent with me recently when I’d been psychotic and delusional, the less they trusted me. It was understandable, but, it was another reason why it was very hard for me to be me, at that time. Having the site owner (who is a trained psychologist) trust me meant a lot.
The third significant way the forums helped me was that they encouraged me to fight hard for my wellness. Ironically the reason they encouraged me to do that was because most of the other regular contributors didn’t seem to be fighting for theirs at all! They were very disempowered. They reflected what I was hearing from the medical establishment which was an extremely disempowering message. As best I could tell, it was “”take your meds” but also, even with them, you will get ill over and over again. There is little to nothing you can do about it.” I didn’t want that to be true! I hated that it might be true of me, now I had the diagnosis!
I really didn’t want that to be true because I knew how horrible the illness was long before I was diagnosed with it. I’ve written about that in Manic People Are Overtired Children, Not Scary Evil Monsters.
So I knew it was an awful disease and I really wanted to know, can I do anything about this? Can I fight back? Can I manage my own wellness? if I try am I doomed to failure? The medical establishment seemed to be saying “on the whole, no, there is little you can do apart from being sure you stay on your meds.” What about the people on the forums? Had they tried and failed? I didn’t exactly ask them but I could tell, no, they hadn’t tried and failed. They hadn’t even tried because they were too disempowered. They didn’t even know they could try. If they had wanted to they wouldn’t have known what to do. Seeing that they hadn’t tried what I wanted to try, which was, fight for my wellness, left the possibility open that it might work. It gave me hope.
So I determined I would fight as hard as I could for my wellness. So, in effect, I embarked on my own clinical trial with me as the only person enrolled in it. I did an experiment on myself. I wanted to be as mentally healthy as possible so I searched the psychology literature to see what helped other people achieve that goal.
There wasn’t much written for Bipolar people in that regard (if it’s impossible, so what’s there to write about?) but there was a lot written for other people. So I read that. When I found anything that seemed potentially helpful I adapted it to my specific condition – having Bipolar disorder – and implemented it as best I could.
I did become manic one more time but I learned from that and made some adjustments to my wellness strategy and have not become manic again since. I’ve written about other parts of my mental health journey in other posts on here, but I don’t think I’ve ever written about the role the online forums played until now.
I recently wrote to John Grohol, after having no contact for decades, to say thanks to him for his forums and for trusting me. I was pleased to get a kind response back saying he was glad they helped and glad I’d been well.