The Problem with Online Support Groups
Recently a reader wrote into me and told me that online bipolar support groups scared the stuffing out of her. In her words:
. . . is it really that bleak? IS there a place to find support and encouragement and practical advice that isn’t so dire – comment after comment about divorce, violence, anger and mania…. I just need some perspective.
I feel for this reader. She is trying to support her significant other with bipolar disorder and she is finding that the supports are more harmful than helpful.
And, honestly, this is a big problem with support groups – they are often either doom and gloom or sunshine and light, and neither represent a decent perspective.
Doom and Gloom Bipolar Stories
There is no doubt that there are plenty of tragic bipolar stories to go around. There are stories of divorce, anger, violence, destruction and ruin. There are stories where people with a mental illness have left a path of rubble in their wake.
But to be clear – that is not most of us. That is a minority of people, often those who have not sought or have refused treatment.
Sunshine and Light Bipolar Stories
And then there are stories on the other end of the spectrum where it’s always darkest before the dawn. Sure, things get bad but then a miracle occurs and the person with bipolar is “all better” and they live happily ever after with a fairy princess.
But to be clear – that is not most of us. This is mostly just wishful thinking. We all want the fairy princess (or handsome prince) and we all want to live happily ever after. But like for every person on the planet, life just isn’t that simple.
Support Groups Feed off Themselves
Often in online support groups there will be a handful of voices that are the loudest and these may be sunshiny voices or they may be gloomy voices depending on where you go. And these substantial, loud, overarching voices will often drown out voices of descent. Others offering another viewpoint often don’t last long in this environment because they feel like they aren’t being heard. So, as they say, birds of a feather flock together and in the case of support groups, people of the same opinion, bitch and moan (or offer platitudes) together.
Even-Handed Support Groups
One of the things I’ve been told that people respond to about my writing is its even-handedness. I try to deal with multiple sides of an issue and be neither doomy nor sunshiny. Some people really like this about me (and some people don’t).
And, personally, this is what I would look for in a support group as well. I would look for a place where all voices feel heard and one drastic perspective doesn’t take over the conversation. I believe in hope without irrationality and realism without doomsdaying.
One piece of advice I can give on finding these groups is to look to in-person groups. People are often far less entrenched in a one-sided viewpoint when they have to represent it in person, and often, more people are given a chance to speak when their face is actually in the room. It may be more challenging to take part in an in-person group, but it may be more useful. (Contact your local NAMI, DBSA (for depression and bipolar) or other mental health organization to find out what support groups are near you.)
Now, I don’t have a magic answer as to where you will find this place online, but I’m hoping that some of you do.
If you’ve had a positive experience with online (or other) support groups – please share it below!
PS: If you’re looking for an online support group, you might want to try one of these.
Not bipolar related but my dog was recently diagnosed with diabetes. I joined two Facebook support groups for owners of diabetic dogs. They both scared the crap out of me. It was all doom and gloom – dogs going blind, having seizures. liver failure, kidney disease, dying in their sleep, etc. I just wanted people to tell me that it was going to be okay and that once they got their dog’s blood sugar under control, everything was fine and that their dog is happy and healthy. I spoke to a few people in real life who have diabetic dogs and that is exactly what they told me. The support groups were worthless to me and just made me have panic attacks and sleepless nights. I even seriously considered giving up my dog for a few days there.
Right now, I prefer trying the in-person approach before I try the online. I went to my first DBSA group last night. I probably will not go back, because not only was one woman, who was not the facilitator, allowed to dominate the group, she was also allowed to continuously interrupt other participants and give them inappropriate advice and instruction, all of which are counter to the group’s own stated guidelines on their website. When I say inappropriate, I mean, for example, telling another woman who’s contemplating divorce that she shouldn’t go through with it, she’ll regret it, and telling her to watch some Christian movie about keeping your marriage together. That’s just one example. I suppose there are worse things that happen in other groups, but that was bad enough to me.
There are other groups throughout the week at another location in the area, but I believe the same woman may attend most of those as well. I’m going to try at least one of the other groups before I make a final decision. I may end up contacting the regional director about the situation who, by the way, was present at last night’s meeting. It’s extremely discouraging when you’re in a truly vulnerable position and trying to get help for yourself but encounter something like this, where facilitators are supposed to know how to do their job for the good of the group, but don’t.
I attend an in-person DBSA support group and being a member of that group has helped me in so many ways. It has been very helpful to network with others in my community who struggle with depression and bipolar disorder. I have gotten a lot of good information about treatments, doctors, and work-related issues. The support group has given me a lot of hope. I am in some on-line support groups, but I don’t look to them for emotional support, I just find good information in those groups sometimes. I am a big believer in spending a lot of time offline. The Internet has helped me a lot because so much information is available, but spending time with people in real life has been very important for my well being.
I am losing my control..im on meds and cant afford some which r very exspensive …im very confused looking for answeres I see a pyciatrist phycotherapist and medical dr im out of my mind and go through spats like this were im evil angry and want to hurt myself…i just came to admit I have bipolar ptsd and anxiety diorder ive been in denial and went to a neuroligist today… He told me that I have too much dopimine in my brain heck I thuoght I had parkinsons and you have no dopimine in your brain for that he proceeded to tell me im bipolar and need to talk to my drs for more meds ….i can barely work now with what im on letwas alone mm atmy wits end I have been like this since I
Hello Natasha;
My ex suffered Bipolar Type 1 with psychotic features and sadly, although diagnosed in his teens, now in his 50’s, he refuses treatment and has lost all family and friends. I want to thank you for being a voice of reason regarding this illness. I knew nothing of it until my ex, and with all the research I’ve done since, you’re the only one that gives a balanced perspective. The first article of yours I read was “leaving someone with mental illness”. I had horrific guilt in doing so, however I realized he was never going to take responsibility. I sought out online support groups and as you mentioned some are nothing but unrealistic doom and gloom. I won’t say the name of the group, but one of the members, [moderated] is the most hateful spiteful person I’ve ever come across and it concerns me that she’s even allowed to be in this position of a leader. She’s loud, overbearing, insulting and domineering and belittles all members that politely disagree with her. She refers to her ex’s new partner as a “ho”. Many members and even her peers question if her ex was even indeed suffering bipolar as she’s so controlling, anyone would run from her. Her ex didn’t have a diagnosis, only hers. She deletes anyone that may give positive advice to a new member or offers them any hope. She insults both the new member for not immediately leaving as she demands, and chastises the current members that offer non-judgmental support. This of course is a group offering assistance (supposedly) to spouses of someone suffering as you had mentioned in the beginning of your article. I was so disappointed with her aggressiveness, I had to leave the group. It’s so bad, that when I joined, I immediately received a private message from another member, advising of her attitude and offering the names of other groups to join. I form my own opinions, so I decided to disregard the private message I was sent, however sadly, saw for myself how condescending she is. I can’t imagine how many families she has single handedly destroyed. Fortunately, I’ve discovered from your posts and friends who also have a partner with the illness, that there is hope for people suffering and their families. It disgusts me the damage some people set out to do. If anyone finds they’re only getting one perspective in a group, (bad or good) I would suggest to continue looking for one more supportive. People can live productive lives with this illness if they’re willing to do the work. Please don’t let one horrible group or aggressive person, be your only advise. There’s lots out there if you keep looking. Thank you again Natasha for all your informative articles. I’ve since learned that a long time friend of mine also has Type 1 and because she journals, seeks medicinal help, therapy and regularly see her PDoc, nobody would know she suffers. I’ve sent many people to your blog to find out for themselves that life can go on, in a positive way, despite a diagnosis. Cheers and much love.
The person you refer to at the beginning of the article is a family member/carer for a bipolar person, not bipolar herself. I think the two groups bring different needs and perspectives to their support group search. I have a public page and a closed group and in the latter it’s made clear that family members/carers shouldn’t join. What’s depressing and unhelpful to them is just validation to us – well, usually. :) There are groups specifically for them and that’s why.
I have gone to in-person support groups and had a very good and a pretty bad experience with them. The good one I ended up “inheriting” from the founders who moved away, and the other one was a very large DBSA group run by two guys, one of whom (the founder) was a very charismatic and formerly famously writer. Both of them had a “fix-it” attitude, not a supportive one. After each person “shared,” more often than not one of those two or some other male (sorry, it’s what I’ve seen in many places) would either “correct” their emotions or offer practical advice on fixing things. Ugh. Set me back a ways in my “recovery.”.
The good one was good because it was small and we all cared about each other. Simple as that. One person towards the end tried to hijack it and turn it into a 12-step group, and at that point attendance dwindled and I ended up folding it (after having to basically kick her out, which was not easy, given my personality).
My experience with my online page has been better, at least for me! I try to keep the page balanced so that “regular” people as well as bipolar people see that there’s a spectrum of bipolar experiences. It tends more toward the dark side; I think it’s okay for individual groups to have their own personalities and lean light or dark if it’s made clear that both ends of the spectrum are populated. And well, if bipolar were a walk in the park or even an eventual or off and on walk in the park, nobody’d need a support group.
My page and the closed group seem to be reversed in how they function – probably from my own inexperience with closed groups on Facebook. I think it would profit from a co-admin. Now hiring.
Funny you just reposted this article. Yesterday I posted a plea for honoring the “spectrum” in posts and comments, just as you would do in an in-person group. Respect and civility – and balance – matter everywhere.
I’m pretty late to comment but here goes. Fantastic article. After so, so many years, I’ve pondered again and again about a definition of getting/feeling better. At one time, I longed for things to be as they were before I lost control of a wonderful life. Now I think differently. I know that life won’t ever be the same, and I do not feel like my illness has brought anything positive to my life. However, I look at happiness and content in a new way. I am so isolated, and that is so hard. It’s like, “You don’t know what it’s like ’til it’s gone.” I never dreamed that I would not be out to lunch nearly everyday with colleagues. Now, I’m. So rarely invited to lunch. But, I have my family back. I have a good psychiatrist. I. Laugh again. My husband and I sit together again in the morning bemoaning the news of the day. I do something again on New Year’s Eve. I’ve paid my $350,000.00 of medical debts incurred over my eleven years of misdiagnosis. I take a lot of drugs, but they are the right ones. I’ve accepted rapid cycling. Once I was an English professor and so active in my field. Now I’m so grateful that after 17 years of an inability to concentrate and read novels, I’m getting it again. I’ll shut up. So, how does one define a better life. Doing the best I can. Oh, and the best thing may be that I don’t care about spelling and proof reading anymore…………
Finding the right place to feel at home in a group for me was a bit of trial and error. While I agree with many of the things in this article as far as the “doom and gloom” side goes, I think that people tend to seek out the group that best fits their place in their own recovery.
Not everyone is at the same place in their battle with the illness that they face and some, although it my sound counter-productive, are not yet at a place where they can start to really be proactive in their battle. This was definitely the case with my own treatment. Many of those who are “hopeless”, in their own eyes and minds, will tend not seek out the proper group for fear they will be seen as “a bad seed”, or, negative by others. They want and may need to commiserate at that stage they find themselves in. Then, as they figure out that they are ready, they move on to another stage and find a more appropriate group.
Feeding off of others is one way to put it when talking about a group dynamic. But that statement is not objective to what may actually be occurring. This “feeding” can be seen in almost any group environment, good or bad. It may well sometimes be that someone needs to hear how bad it is in order to realize how to appreciate their own situation.
And let’s face it folks…..it’s the internet. The sheer numbers alone will dictate that there will be a vast amount of groups that are “gloom and doom”.
Beyond that there can be valuable lesson to learn from “watching the movie”, so to speak. In the group I am in, there are many people who share and while not all of us are all strong at the same time, I believe that the opportunity to help those struggling, along the way, is what provides us with insights into our illnesses.
I think that the statement, “There are stories where people with a mental illness have left a path of rubble in their wake…….But to be clear – that is not most of us. That is a minority of people, often those who have not sought or have refused treatment”, is not well thought out. There are MANY people who have sought treatment and have had severe difficulty with their lives, many times leaving families disrupted and lives altered. And beyond that, your article fails to mention the rate at which people commit suicide each year DESPITE the fact that they have sought treatment. When you say, “a minority” and “us”, it conflicts.
Hi Charles. I just wanted to say you brought up some insightful stuff. Liked that you mentioned that everyone is in a different place in their recovery – hence, the need for different groups. Everyone’s experience with bipolar is different as well. Some people’s experience and outcome may have been really negative, and that can certainly make doom/gloom groups more attractive. That applies to the the more fluffy, sunshiny groups as well. I don’t necessarily share the same overly positive views, but I do open myself to the fuzzy feelings if only to temporarily counteract the effects of my sometimes very dark thinking.
I left a comment last year describing my in-person support group and have since switched to online support via a private Facebook group made up of friends and friends of friends. A friend of a friend who is now a friend started it when she noticed similarities between her struggles and ours. This one’s run by amateurs and it works well for me for the following reasons:
1. I’m culturally aligned with my peers. We’re alternative weirdos, ravers and Burners and appreciate one another’s lifestyles because we mostly live them together (though in separate geographic locations). As much as I enjoyed my in-person group, I feel solidarity with “my peeps.” Some of us see doctors and therapists, some are on meds, but some, like myself, manage without these or seek alternative mood management methods. Everyone’s extremely educated, empirically-minded, and informed of the latest research and news.
2. I can see my patterns because I’ve left a written trail. I’m not big on journaling or data tracking my moods, but I can gauge improvement based on how I write about what’s going on. I can also see and comment on other peoples’ patterns. Spectacular improvement for everyone overall.
3. If I post and post and post and post, I get worn out on my own shit, which exhausts the fixation du jour.
4. I have a place to vent my spleen when I’m zooming. Before I understood what was going on in my head, I put this stuff in public and got unsatisfying responses from friends who don’t get it. Yes, they were well-meaning, but they don’t understand mood disorder management, which jacked me up even more.
5. I’m an introvert writer. I express myself better in writing and someone’s always on call. Not everyone has the time or energy to respond to my data dumps, but there’s always one person who can say something supportive or offer a virtual hug. As an introvert, that’s plenty satisfying for me.
6. New group candidates are culled from our friends’ lists. If we see someone who seems to be struggling, we extend invitations. It’s a selective process, and we’re all women.
My online support group is kicking ass, but it’s a particular mix of people filling needs based on our knowledge and understanding of ourselves. An in-person group was =extremely= helpful for the seven or eight months, because it taught me what I need in a support environment. I was fortunately able to find a collection of folks in the same boat. I encourage anyone who believes that an on-line group would benefit to start their own and be choosy. =)
I tried MDJunction and made a heart felt post which took courage for me to do and I reached out for others, apparently I used a bad word and there was an uproar and one deleted the whole post! I was just trying to get it out and I cant censor a bipolar ramblings trying to be honest for once to strangers who are there to help. Well to me thats not fair, I’m even sure I pre-warned of what I was typing was from the heart also and never cursed though the whole thing. It made me upset when I was already so bad I was doing something I wasnt comfortable with doing in the first place. I’m rambling, sorry but thanks for listening, I dont want to quit the site for one person but my problem makes it tough when I’m upset not to want to blast him with messages cuz I’m feeling out of control.
mike
I am a sufferer of bipolar disorder with many hospital admissions and suicide attempts and 10years of self harm I would like to put it out there to let as many people know about a book I just read it describes people’s stories of how they have achieved remission from episodes it is totally positive yet realistic giving sound advice on how to stay episode free with self management and awareness of early warning signs and what to do. This book is full of hope and I wish I had it 10 years ago. It would be invaluable for newly diagnosed and old hats like me. The book is: A Lifelong Journey staying well with manic depression/bipolar disorder author Sarah Russell. I hope this message gets out please read.
Hi Natasha,
Thanks for your article – it’s so true! I think some people you talk to are still coming to terms with living with Bipolar and this may reflect their viewpoint (that is doom and gloom).
Yet somehow I find that less irritating than the ‘sunshine’ stories:)
Whilst I have no doubt the authors of ‘happy endings’ mean well.,frankly it makes me feel somewhat inadequate. I think what’s requred is a realistic and pragmetic approach to the tough times (tempered by compassions and genuine support) and positive reinforcement through the easier times.
I have found I don’t need a ‘group’ per se but rather a selection of like-minded individuals who are capable of mutually supporting each other. For example I went through a particularly rough patch last summer and the encouragment and compassion of a few on Twitter really helped me. It also encouraged me to be honest about how I was feeling withut feeling I was offloading on someone to their detriment. It was a huge relief as I have a family and I feel an obligation to maintain a strong front as much as I can.
I meed help on medication. Dr. wants to put me on lithium Topamax and Thorazine. To much?
Hi Jmdluongo,
I can’t say whether that medication is right for you, everyone is different. That might be the perfect combination for some and a horrible one for others. It all depends on how you, personally, react to medication.
You didn’t mention your diagnosis, but I assume it’s bipolar. If that’s the case, it would seem that your doctor is trying very hard to stabilize your mood, probably mania, because that combination is quite strong and anti-manic heavy.
It’s essentially two mood stabilizers and an antipsychotic. That would not be an unusual combination for a person with bipolar disorder, although, like I said, it would be strong. But that also depends on the dosages.
If you’re concerned I recommend you talk to your doctor about your concerns. Start any new medication on a very low dose and see how you react to it. If it’s OK, then you can increase the dose if you need. If it’s not OK, you can look at doing something else. _Slow_ is the name of the game.
You can research your medications here: rxlist.com
– Natasha Tracy
Hi all,
In writing this article I came across a bipolar support group that seems like it might be useful for some: http://www.reddit.com/r/bipolar/
I’ve taken a cursory look and the people seem informed and helpful. You do have to sign up for a reddit account (free) to post, but other than that, it looks pretty user-friendly and they seem to ask good questions.
If you have experience with this or other groups, please feel free to jump in.
– Natasha Tracy
Nice one, Natasha.
I’ve been a long time reddit user, and 2 bipolar communities exist there: /r/bipolar and /r/bipolarreddit (http://www.reddit.com/r/bipolarreddit/). I prefer the latter.
Best wishes.
I am member of few online communities. On one I met two people whom I kinda adopted as my siblings (they have other issues than I do, but we are all troubled intellectuals with more issues than National Geographic). Although I rather use it for meet people and filter them as friends by interests, rather than diagnosis. This place sometimes gets bit overdependent on medical model… to the absurd. I once whined to a person who I need to write a paper on political philosophy and they given us zero instructions and I have no idea where to start. Her advice “ask you pdoc to prescribe you some anti-anxieties” (other time somebody was adviced to have their meds changed or upped when they talked about how they have no friends). This tends to get annoying and one feels reduced to bundle of symptoms… or that if I have legitimate problem, I should just take meds and STFU, because it’s always me, never the others.
Hi VenusH,
If you find a particular community helpful, feel free to name it so others can try it out.
I can understand your frustration with the medical model and I’m sorry if you feel I’m too reliant on it. But, for the record, I don’t think meds are the right answer for everything and they certainly are the right answer for anxiety (reasonable) over a paper or a lack of friends.
– Natasha Tracy
Natasha, this is an excellent post. In 2003-2004 when I was searching for answers, hope and any kind of light I gave support groups a try. What I found was the doom and gloom you were talking about. Constantly rehashing the darkness with no tools to step into the light.
On the other hand the “sunshine and light” groups you speak of are just as damaging. There needs to be a happy medium. An avenue where the darkness and the light can be exposed and explored.
There is such a need for healthy peer support groups.
Thank you for this insightful post.
Lee
Hi Lee,
Thanks for your comment. I’m sorry you had to go through that when I know you were looking for answers rather than, say, moaning and groaning. But, look how far you’ve come – now you’re providing some of that leadership to others. It’s amazing.
– Natasha Tracy
Hi Tracy …You know me and my approach to episode free emotional stability with Bipolar. I have achieved over 28 yeas of stability and have written an e-book about how to achieve it.
I would like to offer a free coupon for buying my e-book to the first 10 people to contact me at my e-mail address. You will not regret the information I provide in “Power of Positivity”.
Hi Fred,
(It’s Natasha.)
No one can see your email address except me, it’s private when you comment, so you’re going to have to leave another link or something if you want people to contact you.
– Natasha Tracy
I have joined a couple of the “closed” groups on FB. They accepted me with no problem. They are closed or private only because they do not show up on your timeline so no one on your friends list can see what you or anyone in the group is discussing. I have found them to be very good at showing all sides of bipolar, not just the bad. They are moderated 24/7.
Hi Norell,
Yes, I think the moderation is key. I moderate here, for example. And initially, when I announced I was going to moderate, some people got very mad about it – like I didn’t have the right! But, of course, this is my playground and I fully intend to protect people while they’re here and that’s why I think, over time, people have become more comfortable with commenting.
– Natasha Tracy
I haven’t been to any online support networks, but I’m blogging for a bipolar group (bipolarbloggernetwork.com) and we are working on building our site. what is it people are looking for in a support group (other than misery loving company, of course). is it just resources? success stories?
Hi A,
Take a look at Karen’s comment because I think that typifies what a good support group is like.
And yes, I think there does need to be quality resources available as well. You don’t have to create these though, but you do have to be diligent about only picking the best ones to suggest to others. I’m extremely fussy, myself, but I think that’s what builds credibility.
And as for success stories, I, personally, don’t think they’re a huge priority as you can find them in many places, books and so on, and unless they’re professionally written they don’t tend to come off well anyway. That’s not to say they shouldn’t be there, just that they might not be the priority.
There’s so much already available online that really just picking the best of it to share with people can be a full-time job and really useful.
– Natasha Tracy
I feel incredibly lucky. I found a support group on meetup that’s run by a woman with extensive personal experience with her own Bipolar. She and several others went through NAMI’s peer-to-peer training. We laugh a lot, but share our real struggles. We offer each other DBT solutions and resources. We acknowledge there is no one path for everyone, and no one has sunshine or gloom blowing up their asses.
We do check-ins on our week at the beginning of each session and make small, achievable goals for our upcoming weeks at the end. This week, I’m working on sleep hygiene, getting dinner on the table at a consistent time every night, and I’ve forbidden myself from writing so I can bring it down a few dozen notches.
People come and go. Significant others and family are welcome so they can understand their partners’ experience and recognize that some of what happens in their relationships is universal. The write-only types who shut down every Jedi Mind Trick weed themselves out.
These people, myself included, largely feel like shit, however, I’ve never met a more positive, pro-active group of people. They’re not positive because they think positively or insist on positive outlooks, but because they’re committed to better tomorrows through small gains. We’re not edging towards perfection, we focus on management, and we recognize that everyone’s different, everyone’s disease is different, everyone’s pace is different, and everyone’s process is different.
Hi Karen,
That sounds so great. It’s what I would wish for everyone if I could give it to them :)
I think the best thing you said is that you’re positive not because of sunshine but because you’re all working towards a better tomorrow (if I may paraphrase).
Again, this is an in-person support group, which just seems to do so much better for people.
– Natasha Tracy
Apart from the little community that’s grown around this blog – I’ve found the great majority of online depression and bipolar boards and communities to be (pardon the pun) depressing.
I don’t want to wallow in self-pity or have others take pity on me.
There is a closed group on Facebook that I’ve found useful mainly for comparing notes on meds and treatment. Apart from that it’s all emo all the time.
Hi David,
“All emo, all the time.” I like that. It speaks (in my opinion) to a lack of maturity in their diagnosis, which I think is an issue. When people are first diagnosed, or if they’re younger, they’re more likely to wallow. And, of course, some people are prone to wallowing no matter what.
Closed groups on Facebook is actually a pretty good suggestion as usually they are moderated by someone, but unfortunately, they are closed so access is a problem.
– Natasha Tracy
The advantage of a closed group on FB is we can say whatever we want without fear that it’s going to show up on our friends’ newsfeed. Some of us don’t want to broadcast this to the world.
Once again I wish to extend kudos to you Natasha for your outstanding writings and the important relevance of your subject matter.
After many, many years as a mental health care support person and advocate for my spouse and long-time participant of Internet mental health blogs and message forums as well as in-person support groups, I would hope your most important message resonates as well as marinates with your readership:
“One piece of advice I can give on finding these groups is to look to in-person groups. People are often far less entrenched in a one-sided viewpoint when they have to represent it in person, and often, more people are given a chance to speak when their face is actually in the room. It may be more challenging to take part in an in-person group, but it may be more useful. (Contact your local NAMI or other mental health organization to find out what support groups are near you.)” — Natasha Tracy
Far too many of these supposed on-line support forums disintegrate into like-minded negativity and fear mongering of one kind or another often dismissing alternative and/or opposing viewpoints or thoughts, in my opinion.
As a former facilitator for a number of years of in-person support groups for DBSA what I also found lacking of Internet support groups is a decorum similar to that read before the start of each and every of our meetings. One of those rules was to only speak from the first person singular, “I” or “me”, and to avoid using the word “you” or from telling anyone what they should or shouldn’t do in order to help eliminate confrontations. In this manner what I often read on these various supposed support forums would be avoided such as the generalizations, presumptions, fear mongering and the dissemination of misinformation as if everyone experiences similar side-effects or problems with doctors or drugs or treatments etc., etc. which in reality is certainly not true. While the mood of in-person supports groups I’ve found to change from week to week the same cannot be said for that of the Internet kind.
I did find several Internet forums of use after carefully dissecting, whether positive or negative in nature, helpful for my purposes in terms of gathering information yet I still am more inclined when asked to suggest and/or direct challenged individuals and/or their support persons to in-person support groups. My reasons for this opinion are partly contained in Ms. Joanne Shortell’s comments:
“Sometimes it’s doom and gloom, sometimes it’s very uplifting, and sometimes we get the giggles and have a good time laughing at ourselves and our disorder. To me this is what support is. We celebrate each other’s victories (and birthdays). We empathize with each other’s pain and disappointment. We help each other see other sides of what’s going on in our lives.” — Joanne Shortell
To which I’ll add the encouragement to get out of the house, a friendly hug and the warmth of another human being, the sharing and discussion of research and information, the sharing and knowledge of personal information (i.e. telephone numbers and addresses), participation in meals and social events together, personal crisis intervention, real-time friendships, relationships and camaraderie but to name a few.
Warmly,
Herb
vnsdepression@gmail.com
http://www.vnstherapy-herb.blogspot.com
Hi Herb,
Thanks for your comment and your vote for in-person groups. If you want to leave the addresses of the online support groups you think are better, please feel free :)
– Natasha Tracy
I have experience of a group or two on Yahoo and also the David Oliver site. I didn’t find the former at all helpful. Indeed, I felt like I was walking on egg shells because folk were (too?) sensitive about what subjects could be discussed; you had to stick”health warnings” at the start of the post if it was, for example, about suicide or self-harm. The David Oliver stuff … I am uncomfortable with the fact that David hard-sells his self-help course on the back of this, but at least his advice in his articles don’t hit on miracle cures! He also bases his advice mostly (or so it seems to me on managing his mother’s bipolar – we have already discussed before how individual this illness is and that there is no one off-the-peg fix for every size! Also, while he has a good perspective on the problems that carers have to deal with, and offers what seems to be some constructive ideas (albeit rather myopic ideas – that “one size fits” all again…) he lacks insight into what it’s like to be bipolar and what motives our behaviour. He comes up with little “tricks” for dealing with our behaviour, from a carer’s perspective,. but he fails to understand why we do what we do – what, in our sick states of mind, motivates us to do X or Y. It is that lack of understanding that which I feel undermines his advice. I’ll give you an example:
WE know how sometimes we can get aggressive and hostile to towards those who love us. His carer’s solution is simple: Be assertive and demand this “unreasonable” behaviour stops, or else carer will leave! We have, he says, control over this behaviour and we can stop it if we choose; in other words, it’s our fault we behave like that, according to him. But it’s not our fault! We do not choose to be aggressive or hostile. We (or at least I) become aggressive because the carer/friends (whoever) won’t leave me alone when I need to be alone! The carers (etc) don’t understand that we need every drop of emotional energy in us for ourselves in order to keep ourselves together, to survive – we don’t have enough to share, as one inevitable must share when anyone interacts with another person. When the other person persists, we have to push them away to survive those moments of crisis, and when they don’t back off we have to do whatever it takes to make them back off. (Am I right? Is that how it is for others? Or, is this just me?) So, we (or at least, I) don’t need anyone to order me to modify my behaviour; I need them to back off and give me some space!
But I think you’re right – it’s hard to get the balance right because when we’re feeling good it can be hard to be with people who are NOT feeling good (not least because they remind us of how we have been) and if we’re feeling low, bright, cheering souls grate on our nerves! So, as far as it is possible to tread a middle way, I think you do that here. I also like how you speak on the subject with authority (you do your research well) and especially of first-hand experience. Plus, you write in a direct and entertaining way, too!
Hi Harryf200,
I’m really complimented that people find this a safe and even-handed space for them. If I can offer that to people then I’m awfully happy about it.
Thanks for the information on your experiences. I’m sure other people would share your concerns.
I can understand your point about aggression but, as you said, you and he are approaching it from two different angles. It may actually be necessary, as a caregiver, to say to someone – that behavior is not acceptable – that wouldn’t be my _first_ line of behavior, but it might be one I’d try when others have failed because caregivers need to protect their own well-being as well. However, like you said, we cannot always absolutely control the aggression and in that case, I would say a break is best for both.
In your case you are saying that your aggression is triggered by something specific – which is good to know, that way you can express what you need and end the aggressive behavior by solving the problem. And no, not everyone finds that a trigger, but I’m sure some do.
– Natasha Tracy
I think the main point about online support groups is that they’re easy to access in times of need – most people posting in these ‘doom and gloom’ online support groups are at a desperate point in their lives and for them, these forums present their only available emotional outlet. They’re very valuable in this sense, but for others who do not feel so desperate this can be a distressing and worrying experience.
I don’t mean to be rude, honestly I don’t, but I think perhaps it would be better of you to have said something like ‘not everyone with bipolar/depression feels so desperate, all the time – and plenty never do’ than ‘a minority of people, often those have not sought or have refused treatment’ [feel this way], since I feel that way a fair bit and I have cooperated with my doctors every step of the way. It just feels a bit erasive, even though I know often =! always. I don’t wanna feel like I’m one of only three people out there that feels this way I guess! x)
Personally I quite like http://www.stephenfry.com/forum/forum/bbc-2-the-secret-life-of-the-manic-depressive (I hope it’s okay to post links!) as a place to go. It seems to have a good balance, though perhaps you’d disagree? You need to register – which perhaps helps to cut down on ‘desperate’ posts. The posters like to think of it as a ‘safe space’ – it is, in fact, where I first learned the term – and I think that’s pretty important. I haven’t posted there in a while, but it’s the first place I think of when I don’t feel so great; it’s a comfort.
Hi Jay,
I’m sorry if I offended you, that was not my intent. When I said “they are the minority” I meant the people who leave a trail of rubble in their wake, not people who share gloomy stories or people who are desperate – those are two different kinds of people. I’m talking about people who are unreasonably destructive. _That_ is the minority. Most of us just have our ups and downs be they however severe.I would never suggest that being desperate puts a person in the minority – just the opposite, in fact.
Also, I’m not suggesting that relaying negative experiences isn’t good. It _is_ good, I’m all for people expressing themselves – I agree, it helps people to realize that they’re not alone and that can be a critical step in wellness. What I’m saying is that when one negative voice takes over conversation, that’s no longer useful. Any one person can say anything but it’s the tone of the group – the overarching tenor – the I’m talking about.
I hope that clarifies my position for you.
Thanks for the link to the support group. Links are no problem here as long as they’re on topic and reasonable.
– Natasha Tracy
I does! Thank you. I don’t go on online support groups that often really, so I haven’t seen these destructive posters so much. I didn’t realise it was such a problem in support groups!
Hi Jay,
I’m sure it’s not in all, which is why I’m hoping that some readers will share the online groups with which that have had success.
– Natasha Tracy
My DBSA support group in Hartford, CT has been wonderful. Sometimes it’s doom and gloom, sometimes it’s very uplifting, and sometimes we get the giggles and have a good time laughing at ourselves and our disorder. To me this is what support is. We celebrate each other’s victories (and birthdays). We empathize with each other’s pain and disappointment. We help each other see other sides of what’s going on in our lives. I’ve been going nearly every Wednesday for 2 1/2 years when I’m in Connecticut. I started travelling throughout the Unites States six months ago to get the word out about our rights to emotional support animals in no-pets housing and to have psychiatric service dogs in all 50 states. Even so, when I’m not in CT I try to Skype in if I have internet access. The group has been wonderful in allowing me to do so.
Joanne – I live just under two hours from Hartford and I’ve been looking for some sort of support group or bipolar friends or whatever to start talking this through. I found several meetings closer to me. So thanks thanks thanks for mentioning DBSA.
Hi Joanne,
I’ve updated the article to list the DBSA alongside NAMI. Really an oversight on my part not to do that.
Thanks.
– Natasha Tracy
Excuse my prior comment; I hit the send button to soon.
Hello,
I hope everyone is having a good day. I have/had issues with going to support groups or leaving comments or talking to anyone on forums about how I feel, I mostly just read them. I found out I was bipolar less than a year ago. I believe and know that I am but have had no problem telling close friends and family about it, but I tend to not bring it up or mention it. I do not want to be known by my illness or be seen as weak.
I am finally deciding to get involved with the groups and with writing. I am currently a psych major and found my outlet through my school studies. This seems like a good blog and outlet to come to.
Thank you so much for the resources and all of the other comments that have been left by others.