How to tell the Story

 As I finished writing the previous post and discussed it with others, I started thinking about the techniques I use to try and overcome the various obstacles to communication that I listed. They don't address all of the barriers and they don't always work, but maybe some of my sneaky ways of cheating the system might help someone else with similar difficulties, or might be tweakable for someone else, or helpful to somebody trying to support communication for people with brains like mine.

I don't know that (or what) you want to know/it doesn't occur to me that it's something people would want to know/I've already told somebody/I can't think of any things to say.  These are tricky ones to get around because it's hard to know what you don't know. In some contexts it helps if people ask fairly specific questions (eg. in appointments), although this can lead to me not saying anything that isn't specifically asked so beware! In other contexts questions make it even harder for me to talk (eg. "are you OK?"/"how was your day?" General statements about the sort of things people want to know can be helpful eg. "please tell me if/when you feel bad enough that you use the crisis line" or "I like it when you tell me about specific things that happen in your day". These don't put me on the spot to perform immediately, but I can use them in future when I want/need to communicate but don't know what to say/whether someone will want to hear.

It doesn't occur to me that other people might not already know whatever it is that's in my head/ I forget that I could say things just because I want to say them/I struggle to say things purely because I want somebody to know. Sometimes I can CBT myself a bit in these situations and/or think back to the frequent conversations with my numerous professionals and peers and remind myself that people don't know what's in my head unless I tell them and there is nothing remarkable about saying things, even if people aren't interested or already know them.

I don't want attention. Telling people one to one and by a non-invasive communication message like text or direct message can help with this. Sometimes dropping things unexpectedly into unrelated conversation works for me though it probably isn't great for the other person! I may also try and change the subject again very quickly afterwards to deflect attention away.

I don't know how to say it. I find processing by writing particularly useful: brain dumps, blogging or just scribbling down whatever I am thinking or is bothering me. Other people use drawing and various different tools to help them figure out what's in their head and how to translate it into something other people might understand. If I don't have the time to do this on the spot I might be able to use a flashcard - I have a cunning one that reads "there's something I need you to know" - to get the ball rolling and help me avoid the distress of feeling trapped and despairing. We might then agree that once I've figured it out a bit if I can't at the time, I will email an explanation or a copy of my brain dump to discuss when we next speak.

Demand Avoidance/Exposure Anxiety/I don't want you to know.

• Writing a text message about my day or my emotional state and sending it before I get home so I don't have to say it. This is less "directly-confrontational" and sometimes manageable. A bit like writing this blog, I can pretend it's just writing and that I'm not actually telling anything to any people. Pressing send can be difficult so it's best if I do it really quickly without thinking about it and then move quickly on to something else.
• Getting in there first before anyone can ask me a question. Sometimes I can't do this though, and other times when I do it tips me over into some weird manic over-talky state which is like an elaborate mask (I can't communicate as myself so I'm almost acting a part and distancing myself inwardly from the vulnerability/anxiety that communicating brings. This is very Exposure Anxiety, if you are at all familiar with Donna Williams/Polly Samuel). So I'm still not sure if it's a good cheat or a bad one, because it does the job of communicating what I need/want to communicate, but leaves me exhausted when I come down from it.
• Saying the thing in some entirely unrelated context where I wasn't planning to say it. This takes my brain by surprise so it doesn't have a chance to say "no" and stop me from communicating. It also gives me a feeling of safety because I have taken the other person off guard with it so I feel in control, which protects me slightly from the vulnerability of exposing the insides. Again both routes around Exposure Anxiety. I hate unpredictability in others but I like to maintain a sense of my own unpredictability... Perhaps because it keeps me freer from expectations that I am afraid I won't meet (ie demands, think PDA traits).

What do you do to help you tell the story? What do you find helpful or unhelpful as someone wanting to hear the story? Please let me know - this is very much an ongoing work for me so any ideas are helpful!

A sensory processing meditation

Imagine it’s Monday morning.

You are getting ready for work. You’re not a hundred per cent sure whether you can face the thought of another week. You’ve got some tricky meetings coming up and a load of data that needs to be done accurately, but you work with a supportive colleague and you know there’s some fun planned in the afternoon. Anyway, you don’t have a choice, because you have to pay the bills and your partner would hardly be impressed if you refused to go just because you didn’t feel like it. Not to mention your manager.

You get out of bed and prepare for the day. You’ve got an outfit in mind that will help you take on the day. What have you chosen? What is it made of? What colour is it? How does it make you feel? Relaxed? Powerful? Cheerful? 

Go and open the wardrobe and look inside. You see that your clothes have been replaced by a very impressive yet rather cumbersome suit of armour.

It’s the only thing there, and you can’t go to work wearing nothing. Your partner who drives you to work is hurrying you along. It’s time to go. You need to be at work. You have a meeting at 9. You can’t miss it.

It’s difficult to put the armour on. Your partner has to help with the gauntlets. You have no idea how you can even begin to do the day wearing this. You have to wear the sabatons on your feet as well. Your partner fixes them on and practically drags you out of the door. It’s hard to co-ordinate your movements.

You arrive just in time for the meeting, but every movement reminds you of this suit of armour. It gets in the way. It makes some very unwelcome noise in the serious meeting. It’s very uncomfortable. The corners dig into your muscles. You must present the information you have brought to the meeting, but you can’t see out properly. The helmet is too tight, squashing your head. All eyes are on you, wondering why you’re not explaining the data. Your elbows and knees rub on the hard metal every time you bend them.

Perhaps you can take your attention off your predicament for long enough to notice that everyone else is wearing armour too. But they all seem perfectly comfortable and are moving on with the meeting smoothly. 

The meeting ends and you never did manage to make a valuable contribution. How do you feel? Angry that you didn’t perform well and it wasn’t even your fault? Ashamed because the manager you wanted to impress was there? Upset? Exhausted? Not to mention in pain and way too hot by this point. But you can’t take the armour off. Everyone else is wearing theirs without comment, and it’s not even lunch time.

"Don't worry, you're fine really!"

You manage to find a friend on your coffee break and ask what is going on and how on earth they were able to cope in the meeting. You friend reassures you that everything’s fine. Don’t worry; you’re OK. Just keep going and focus on the things you’re doing. You’ll get used to it - see - we’re all OK. 

After lunch you discover that parts of the suit are actually lined with sandpaper, and that is why you feel like the skin is rubbing off your toes every time you take a step, and why you get such pain when you stand up and the suit rests heavy again on your shoulders. But when you try leaving your hands and feet uncovered after lunch, you are told in no uncertain terms that it is unacceptable to present yourself like that. You must look the same as everybody else or you have no right to be one of them. You think perhaps you would rather not be one of them, even though you were so desperate to impress this morning. You remember that there were parts of the day you would have enjoyed if you’d have been in that outfit you had in mind this morning. The one you couldn’t find in the wardrobe. 

But by now it’s an effort just to endure what should have been a fun afternoon, and all you want is to be at home, in your pyjamas, safe. 

The constant pain reminds you every minute that you are wearing this suit in response to a requirement of yourself (you can’t go to work naked and you must go to work), your partner (you must leave the house now, and we need to pay the bills) and your manager (you must look presentable like everybody else). How does that make you feel? Angry? Hostile? Rebellious? Now imagine that you have a condition where you find it difficult to comply with your own and others’ expectations or demands even when you need to do something that you really enjoy. How much more difficult does it make it to keep this suit of armour on?

You reach the end of the day, get the suit off and crawl into bed. How do you feel now? Defeated, that everybody else just functioned as normal but you couldn’t? Worthless, because you couldn’t overcome the challenge? Cheated, that you couldn’t enjoy the fun? Frustrated, because you couldn’t prove in that meeting what you really can do?

~~~~~~~~~~~~~

And how do you feel when you find out that everybody else’s armour was fake? Fleece lined and flexible. They weren’t acting differently because it wasn’t different. They didn’t see the difference in your armour. They didn’t listen when you tried to ask, and they didn’t believe you when you tried to say you couldn’t do it. “You’re OK”, they said. “Just get on with it.”

~~~~~~~~~~~~~

NEVER assume you know something about somebody or their experience unless THEY have told you. You can’t assume that because you, or the majority of people, find something comfortable or acceptable, that the individual in front of you also does.

You can’t assume that because you get a sense of belonging by looking the same as everybody else, that all people do. Some people find their sense of belonging in being understood and accepted. In feeling that their needs are reasonable and that they are supported to contribute to the best of their ability. Without that feeling, they will never have a sense of belonging, no matter how much they look like the others in a group.

If we want to call ourselves an inclusive community, let’s not miss an opportunity to create the feeling of value that is so easily stolen from so many vulnerable people.