This next post was written by Lola of Who Needs Normal? , a unique WordPress site I recently nominated for One Lovely Blog award. It is, in my opinion, a guide that is a must read by anyone dealing with dissociative identity disorder…..but mainly by those who support a loved one or friend with this diagnosis. I find the innocence, honesty, and straightforward way in which Lola conveys information on what works for her, as she struggles with symptoms, very refreshing. I think all of you will agree. And even though Lola wrote this post about dealing with dissociative issues, I think her helpful tips are applicable when dealing with most mental health issues. The theme that carries throughout her message…..be gentle. Stop by her blog and be sure you click on her disclaimer page. May I present the fabulous Lola.
Dissociative Symptoms are something I am continually struggling with. For me they most frequently include
- emotionally disengaging from situations – I am present and notice what’s going on, can talk or do something, but I have no emotional response other than “whatever” about anything. Or, if it’s more extreme, I feel not even “whatever”, but absolutely numb, like a robot just reacting mechanically when prompted in the way it’s been programmed to. When the disengagement is more extreme, I still kind of notice what’s going on, but my talking or other reactions slow down or stop altogether.
- staring off into space – I am losing track of whatever I am doing and just stare. Sometimes it’s conscious and I know I’m doing it, but can’t look away from that invisible point or I don’t want to stop staring. Other times I’m not aware of doing it while I’m doing it, kind of like you are not usually aware of being asleep while you are asleep.
- feeling disconnected from myself – I stop being convinced that my body really belongs to me, that I am really me, that this is my voice I am hearing, or that it is even me doing the speaking.
- daydreaming – I am away in my mind, entertaining thoughts of whatever. It’s similar to the staring. Sometimes I am aware that I am daydreaming but can not or do not want to stop it, other times I am unaware that it’s happening.
- partially disconnecting with the world around me – I am notorious for temporarily losing my senses, like genuinely not hearing someone when they talk to me, not seeing something I should be seeing, etc. It happens especially often when I get only one single sensory cue. For example I will be more likely to hear what my mom says if I can see her talking to me, too. But if she’s outside my field of vision and hearing is the only source of telling that something is even going on, I often don’t hear anything.
- forgetting things right after they happened – I am equally notorious for this one. It happens all the time that my mom tells me I that I had just answered her, but I have no memory of having said anything or what we were even talking about. Or that I look down at my hands holding something and I have no idea I ever picked that up or why I did and what I wanted to do with it. Often I find myself in some place around the house and have no idea why I went there. For example mom sends me to get the mail and tell her okay, and then I suddenly find myself at the door and have no idea why I am at the door, if it was for a certain reason, or how I even got there and certainly no memory of having talked about getting the mail.
- blank spells – I lose entire chunks of memory at once. I have blank spells for most of my childhood abuse, but also perfectly ordinary seeming things. For example I just discovered that I have next to no memory of the day I went hiking in the mountains with my family last summer. Nothing obviously bad happened, mom says I seemed to have enjoyed the trip, there are pictures of smiling me in hiking clothes on the mountain, but while I have a vague sense that yes, it could have happened, I lost the memory.
Dealing with those dissociative symptoms is an ongoing challenge. That’s why I thought I’d make a collection of my thoughts regarding what I find helpful and what doesn’t help me at all. Here goes. I’ll do the unhelpful ones first – they’re easier.
- others trying to get me to “snap out of it” – I have had people touching me, shaking me, speaking loudly or even yelling at me and I found all of that extremely disturbing. Imagine someone letting a police siren blare right into your ear to rouse you from sleep. It stresses me, and feels like catastrophe is about to strike. So it’s a big bad fucking idea.
- others becoming scared by it – I suppose it can look creepy, especially when I get an empty stare or my reactions slow down or stop altogether. I have had people get really nervous about it, unable to stand watching me be like this, and the more scared fuss they make, the more it feels safe to stay the heck away.
- others getting mad and acting like I do it on purpose – I can’t count the times when people have been upset with me over not having heard something, forgetting things or not giving them the reaction they desire. I can’t count the times I have been told to “get my act together” and stop acting dumb/silly/whatever. It’s not helpful. I often have no control over it and getting mad at me for something I can’t control is stupid. How would you feel if someone got repeatedly mad at you because your hair is too short for their liking? I can understand that it’s annoying to deal with me dissociating, but getting mad at me for it, for something I can’t just change, is not going to help.
- punishing me for dissociating – I have had people tell me “tough shit” or “forget it” when I had no memory of something that had happened, probably thinking that if they didn’t indulge in enlightening me or something I’d pay better attention next time. Not working. Again, it’s not something I do on purpose.
- getting left alone with good advice – A lot of the time I was taught a technique (counting things, naming x number of things I could perceive with my various senses, giving my senses strong input…) and then told to use it and that’s it. But it’s not that easy. Having a tool is good, but being left alone with operating it is a bit much.
- making me stay in distressing situations – often I dissociate more severely in response to something stressful. I have had my share of people thinking I should “brave it”, thinking it would desensitize me and help me see that the situation is not threatening or something, but instead of doing that it only reinforces that staying dissociated is needed in order to stay safe.
- beating myself up over dissociating – I used to get angry at myself or disappointed or discouraged over dissociating. Suffice it to say that that’s not helpful at all.
- present, calm and no-fuss reactions – dissociation might have become a habitual reaction and can happen without any obvious current outside stress, but it is a stress reaction nonetheless. The calmer and safer my environment, the easier it is to get out of it.
- patience and understanding – I know it’s annoying when I dissociate in inconvenient moments, when others need to tell me the same things again because I didn’t hear it the first time(s) around, when I can’t remember something that just happened or when I become absent in situations where you’d rather I stay present. It’s annoying for me, too, and I am working on dissociating less frequently. It’s helpful when I meet patience and the understanding that this is a hard task.
- being made aware in a respectful way – I am often not aware I am dissociating, and getting asked “honey, are you listening to me?” or “Are your feelings there?” can help. In the same way it helps if someone notifies me of dissociative behavior. A simple: “You are staring into space. Are you okay?” or “Can you look at me, so I can see if you are registering what we talk about?” can make a difference.
- gentle orientation – when I am more severely out of touch with the world and try to come back, I often have trouble getting my facts straight. What reality do I go back to? In my case there’s often a certain insecurity about where I am, how old I am, who I am with etc. In those cases getting casually told and affirmed of what reality I am seeing and returning back to helps.
- help with applying helpful strategies – I can do the counting or naming sensory input or giving myself strong sensory input, but I can’t always do it on my own. Gentle prompts help.safety – if some situation stressed me into dissociation, I need to get away from that situation. I need to feel physically safe and emotionally safe.
- engaging activities – sometimes the most helpful thing my mom does is engaging me in something fun, something energetic or something that is likely to elicit a positive emotional response. Music works well. When I am having a longer period of time when I repeatedly slip away from the here and now, she’ll often put on music for us to dance to, or suggest a game of playing tag, or anything else that helps me be more involved with what’s actually going on.
- reassurance that someone wants me back – this one is very simple, but really helpful for me. My mom keeps on telling me that she wants me there with her, all of me. That she wants to have me back. I struggle with feeling wanted, so this makes a big difference, even when I can’t immediately react to it in the situation.
- learning to read the internal signs – nobody can help me do that one, because it’s only about me using the cues I get from the outside to take notice of what’s going on inside when I am starting to dissociate, so that I get better at telling that it’s happening.
- wanting to remain present – this one is also something I can only do on my own, obviously, but it’s very helpful. Actively fighting dissociation when I notice it, actively wanting to remain present, actively wanting to remain in touch with what I feel and being motivated to keep on working towards remaining present is one of THE most helpful things for me.
- actively creating safety – this is an important and very effective one for me. Noticing what’s going on and wanting to remain present are good and well, but I need to feel safe in the situation I want to remain present in as well. For me creating safety often means to seek out mom. Or it means to talk to her about something that is bothering me. Or it means to remove something that is bothering me. And of course looking for ways out of situations that are more than I can take.
- becoming aware of and actively trying to hold on to feelings and to expand what I can take – this ties in a lot with safety. The safer I feel, the more I can consciously try to stay connected with what I am feeling and to tolerate the presence of the feeling.
- keeping calm, being patient and tolerant of failure – this is the one I struggle most with. In trying I will obviously slip up and fail a lot and if I am not tolerant of that and of setbacks, I will not be getting anywhere. That one is so easy to write down and so hard to do. But I’m still trying, so I guess I’m still good.
Phew, long post, and that’s all for now. For all of you who are struggling with dissociation, I’ll be happy to hear what you find helpful or unhelpful for yourself