Bad Twitter Vibes
We’re struggling today. Something happened yesterday or last night (we think) or at the very least it was quite recently, and it’s upset us and we are unable to move on past this incident. I don’t know how to get over it without discussing it with my psychiatrist, but I don’t see her until next week, and I can’t wait that long for someone to console us. So I’m going to tell the tale here, at the risk of embarrassing one or all of us K’s on Twitter. That’s where all this started. Twitter.
I began using Twitter sometime in December of 2011, from what I can tell, although we had the account for much longer; I created my blog close to New Year’s Eve. I used the account before December to occasionally tweet to my husband, and to myself. That’s right, I tweet to K. It helps us remember things, people, places, events. So I think I tweeted to myself for about 2 years before I ever followed or was followed by anyone. I was completely anonymous on Twitter. I told no one that we had an account or a blog. NONE of my real-life friends know I have a blog or Twitter account. I used the blog to empty my mind of all the crap that was pounding in my head at most every moment of every day. I wrote in our blog as a way to release my confusion, frustration, and tension. I could say how I felt, and no one would ever know or judge me. But I was severely depressed in December, and someone in our head got the idea that perhaps we could find some type of support group online using Twitter. Or at least, find another person, anyone, who understood what it is we go through everyday. What I’m talking about is our dissociation. Hallucinations, voices, lost time, severe memory loss. All of these things together make my everyday life quite a challenge on many days. We have good days and bad days. Sometimes we forget we’re ill. Other days we are so ill that we cannot function at all.
So anyway, I began to search Twitter for someone “like me”. I don’t even know now how I found anyone at all….I can’t remember. But somehow we found some people who were at least similar to us, for example a woman with OCD, and we began to follow them, and this led to people following me, and so on and so forth. Now I can’t recall exactly when this happened, but at some point I came across a person on Twitter who had a blog and who wrote about the same kinds of experiences that I have. This person described symptoms just like mine, and I was thrilled to know that I’m not the only one. I began to read her blog from the very beginning; it took me weeks, even months, to read all her posts from the beginning of her blog. But I got to this one part in her blog where she talked about finding someone online who was “just like her”.
I was elated-this woman had gone through a situation exactly like my current one. She had found someone who seemed would understand her and her illness. Of course I’m not giving any names, but this woman contacted the other woman she’d found, and apparently they ended up becoming friends. Now let me say this first and foremost-I was NEVER expecting to be friends with the woman with the blog. I was just hoping she might answer a few questions, or give me some advice about how to handle my symptoms or at least what to say to my shrink. I was first diagnosed with Dissociative Identity Disorder way back in 2004, but shortly after that I had to move and so I lost both my psychiatrist and my psychologist, who was helping me explore my diagnosis and treatment options. When I moved, I forgot. That’s right, I forgot my diagnosis. I guess it was just too much for us to handle and so we pushed it out of our mind. I forgot about the therapy sessions in which I’d “switched” and I forgot about all the different “me”s who had shown up for therapy.
What was left in my memory was my prior diagnosis, which was Schizophrenia. I’d been diagnosed with that around 1998, and that was the label I wore for all these years. I saw different doctors, but they always assumed that my diagnosis was correct, simply because I heard voices in my head. I know now that this is not indicative of being Schizophrenic, it’s just a classic symptom. So basically, what happened was I’d been going through my day-to-day life thinking I was Schizophrenic. I certainly had some of the same symptoms-hallucinations, delusions, loss of train of thought, social withdrawal, and paranoia, in addition to the voices which I heard in my head. So this diagnosis seemed to fit, and it was assumed by each doctor that I saw that this was the proper diagnosis. No one had ever explored other options, except for that one psychologist who’d finally identified the real problem but whose diagnosis I had forgotten.
I’m telling you all this so that you understand how it is that I believed myself to be Schizophrenic when in fact I wasn’t. I wore the label for years, as scared as I was of it. I told only a couple of people whom I trusted, including my sister. Fast forward a few years, and K began dating a man who was in college, studying psychology. It was he who first declared my misdiagnosis. He said he simply did not believe I was schizophrenic, but rather that I had some sort of dissociative disorder (Apparently I had “switched” in front of him before). I knew nothing of such disorders, but it was only a few months later when my psychologist threw out the term Dissociative Identity Disorder. I really don’t remember too much from that period in my life. It feels like a hundred years ago. But I’ve lost my place in this story and to be honest we don’t even remember what it was that we were writing about. I hate when that happens, and it happens frequently. Oh yes, now I remember.
I found the woman with the blog who had the same symptoms that I had. I thought, after reading her blog, that I had finally found the answer to all my questions about what was wrong with me. I’ve been called “mentally ill” since I was first hospitalized at the age of 16, and I’ve been diagnosed with a dozen or more different disorders, but I’ve never had a doctor give me a satisfactory explanation as to why or how. This woman’s blog opened my eyes to this new term, which was somehow strangely familiar to me. Dissociative Identity Disorder. It seemed to ring a bell somewhere deep inside of us but I just couldn’t put my finger on it. But what I did was this: I began reading everything I could find on DID. Every book at the library was checked out and read. I Googled and Wikipedia’d and read any information I could locate on this disorder.
Around this time, I found an old diary which talked about my diagnosis of DID, and it was a tremendous help; I took it to my psychiatrist. But what was most informative to me was this other woman’s blog. She described my experiences perfectly, although of course we lived very different lives. I decided that I absolutely had to contact this woman, just as she’d done when she’d found someone else “like her”. I figured if she could do it, if she could find a similar soul and communicate with them, then so could I. Again, I never expected to become good friends with this woman, I just wanted some advice from someone who suffered from DID. I got her email address off her blog and I guess it took me days to get the courage to write the email, I can’t remember. I just remember that when I sent the email, I was excited. I was excited by the thought of her emailing me back and telling me she understood. That she’d been there, that she’d gone through the same things. When she didn’t respond to my email, I realized that I’d told her about the blog but forgotten to give her the address, so I sent another email, this time with all my contact information as well as my blog URL. I thought maybe she would read my blog and agree that I was DID and that perhaps she could help me figure out what to say to my newest psychiatrist, who had not yet fully diagnosed me but who was in the process of doing so.
Well, I waited for what seemed an eternity, and I never heard from the woman. She never responded to my emails. I thought I must’ve come across as some psycho stalker or something; I couldn’t remember what the emails had said. I was discouraged but determined to make contact with her, for she was the single person I’d come across in my entire life who seemed to understand the symptoms we have. Months had passed since we sent the email, or at least I think so. One of the K’s is very bold and wanted to send her a Direct Message on Twitter. Well, that’s how we found out we’d been UNfollowed. Now we know for a fact that she had followed us at one time, for we never delete our messages and so we still had the email from Twitter, telling us she’d begun to follow us. That could, in fact, be how we found her in the first place; I just don’t know (damn this memory loss!). But I tried to send a DM and that’s how I found out she was no longer following us. So without thinking about it much, I sent a Tweet, saying she’d begun following me in January and I wanted to DM her but she must’ve unfollowed me because I couldn’t do that and she responded, very coldly I thought, “I never followed you back. You have our email.” So my feelings were hurt. I admit it, I’m overly sensitive. But for her to assume that I’d followed her first really pissed me off. SHE followed ME first, and I had an email to prove it. Anyways, I took this straight to heart and got my feelings hurt and I never did send her another email.
However, I continued to read her blog.and learned how she’d been able to better understand her illness through her writing. So I wrote. A lot. I blogged, I had a diary on my laptop, I had a hardbound journal, I had a sketch diary. I wrote and wrote, and indeed began to learn things about myself and my symptoms. The first time I read a blog post that had been written by one of the other K’s, it really freaked me out. I mean, there was now solid evidence that I was going through something major. Still, I didn’t mention it to my psychiatrist. I just continued to research, to read, to learn.
I don’t know how I had the courage to do it, but I actually went so far as to contact the other woman with DID, the one that had advised my blog writer when she’d written her an email. I was scared to death that she was going to be mean to me, like I felt the first woman had been. But she wrote me back and was very nice. She told me a few things about dissociative disorders and said while she didn’t have time to be a great source of support (she’s very busy), she’d do her best to answer the occasional email or Tweet. I have since made contact with her a handful of times (we think) and she’s always been very nice. However, I found out, upon reading her blog, that she considers herself to be cured. She no longer suffers from DID-she’d gone through something called integration, in which all of the personalities merge. So I was back at square one. The one person I’d communicated with was no longer suffering from the illness I was trying so hard to understand. So I continued my search. I was successful in finding a woman who has a dissociative problem, but after I emailed her I found out that she does not have DID. Still, she became, and remains, a tremendous source of support for me, and I owe her so much for all the advice she’s given me since I first contacted her. She’s the person who told me how to create a blog actually. Her blog is brilliant, and I’d post a link but again, don’t want to embarrass anyone.
It was a gradual process, but I began to find others like me, other people who heard voices and lost time, and I even found a few with DID. Now it’s extraordinarily difficult for me to talk to strangers, as I suffer from Social Anxiety Disorder, and I fear most people. So just sending an email to someone I don’t know is very difficult for me. Which is one reason I’m proud of us-we actually reached out to some people on Twitter and met some folks with similar disorders and symptoms and we attempted to be social and supportive in the hopes that what goes around would come back around. And it did for the most part. I met some wonderful people, who didn’t think less of me because of my mental illness, who didn’t judge me, who understood moodiness and depression. Still, it bothered me that the DID woman with the blog never wrote me back.
Then one day, she wrote a blog post, and I gained some insight into her feelings. She blogged about how much she appreciated her readers, and that she was so happy to be able to help others struggling with similar disorders. She wrote that she loved getting emails from people who’d been helped through her blog. So I decided to once more send her an email-I thought since she said she appreciated the positive response from her readers, well I thought she’d like to hear how much she’d helped me. But before I could find the courage to send such an email (I mean, this would’ve been the third email sent to her, and that was like stalker material), she wrote another blog post. This one stated that she didn’t read the blogs of other mental patients, because she found them to be triggering. Well, that certainly made sense to me, as I am often triggered by things I see or read. So I never sent the email to thank her for her help, the help she doesn’t even know she’s given me. I’m afraid of her now. I really am. She hurt my feelings twice, and I can’t risk getting hurt a third time. I began to focus more on the people I’d met on Twitter, and on my own blog.
I was starting to communicate with a number of Tweeps and actually, for perhaps the first time in my life, I felt accepted in spite of my psychiatric condition. I gained confidence and started initiating conversations with people on Twitter. This is unbelievable to me as I write these words-I have NEVER been able to approach a stranger and start a conversation. So I seemed to be making progress, getting better. Plus, I was sometimes offering my support and experience to help others on Twitter, sometimes a young girl who was cutting, sometimes a man with an anxiety problem. I felt like I was doing something that made a difference. I felt like I was helping as well as being helped, and this made me happy.
At last I had the courage to bring up the subject of dissociation with my doctor, and was happy when she agreed with me, that yes, I had a dissociative disorder. She didn’t say I had DID-it will take a long time for her to positively identify my disorder-but she told me I was on the right path. So I continued my reading and researching, and talking to people with DID. They all seem to think that DID fits me like a glove, and I have come to believe that too, but I won’t know for sure until my doctor has treated us for a long time, probably years. I am impatient but understand her point. She wants to get to the heart of our illness and see what’s really going on in my head. My biggest fear at this point is that we’ll have to relive the childhood trauma which she believes is the cause of this illness. Otherwise, I’m feeling more positive and confident and social. I even got an invitation to join a DID support group, which I did. The people there seem incredibly supportive and understanding. Hopefully I’ll be courageous enough to participate in the group.
But now here’s where the bad part comes in again. One night, maybe last night, I’m just not sure, I was on Twitter, just lurking really, not talking to anyone, just reading the timeline, and I noticed a person with whom I’d communicated several times was on there and seemed to be having a very difficult time. So I thought I’d reach out and let her know that she wasn’t alone. Well, I’m not sure how it happened, but she misunderstood me and got all upset and accused me of yelling at her. I was shocked. I’d never had a disagreement with anyone on Twitter. And, as is my nature, I took it personally. It completely smashed my self-esteem and I was crushed at how mean she’d been to me when I’d only been trying to help. I guess I’m not very good at offering help or advice. And so I’ve come to a decision. I’ve decided that I won’t be using Twitter as I had been doing up to this point. I’m not going to try and help people, for it only sets me up for rejection and ridicule and failure and pain. I’m going to take some time off from Twitter; my husband says I’m obsessed and spend far too much time online anyways.
So I will continue to blog, as it is something that I do for myself, not for anyone else. The blog is my outlet for my madness. I’m always surprised if someone reads it, and delightfully stunned if I get a comment. But it seems to help me better understand the different K’s, we communicate with each other through the blog you see. So that’s pretty much all I wanted to say. That I was blogging and using Twitter to help myself get better and find support, but that I’d been hurt and felt like I failed. And so I’m not going to do the Twitter thing for awhile. At least, I’m going to try and stay away from it. I DO have an obsessive personality, so it will be nearly impossible for me to give up my current obsession cold turkey. But it must be done. My feelings are hurt and my confidence is blown. I’m scared to use Twitter right now. I shall miss my new Tweeps, and I’ll definitely miss the support I received from the other mentals out there. But this is how I feel right now. I’m hurt. It’s going to take me some time to get over it. I take everything so personally, it’s a character flaw I have no control over. So there you have it. That’s why I won’t be on Twitter for awhile. It’s also why I don’t trust anyone on Twitter anymore. Too much negativity. Too many bad vibes. Too much disappointment.
NOTE: Not all of the K’s necessarily feel this way. Some of us may continue Tweeting. And we’ll definitely continue blogging,as it seems to make us feel more “sane”. Hopefully, I’ll see you Tweeps again soon. I just have to be sad for awhile, and we need to be alone to sufficiently sulk. That’s all I need right now-just a private pity party for the girl who made a fool out of herself, not once, but three times. I wonder if I’ll ever have the courage to speak again to someone in need. I wonder if I’ll ever be able to comfort someone, cheer someone up, make someone smile. I have my doubts. It seems everything I do now is wrong.