I Don't Know How To Be

Autism, Rejection Sensitive Dysphoria, and Love

(a frosty morning that knows exactly how to be)

I have been married to my gorgeous husband for 31 and a bit years. And I love him to bits. They have been glorious years, anxious years, amazing years, difficult years, loving years, frustrating years, growing up together years. Ups and downs, as everyone knows, are part of married life, and we’ve weathered them all. We are an amazing team that works together brilliantly, and also two individuals who sometimes clash. You have to live through the difficult times to appreciate the good ones, apparently. And mostly it has been fantastic. But . . .

I DON’T KNOW HOW TO BE.

It’s a feeling I circle round to again and again. I work through it for a while, doing all the self help stuff, (I even tried a real therapist for a while - though that just ended up making me cross), working really hard on myself to get to an equilibrium and manage to suppress my discontent with myself. Just who am I? And why don’t I know how to be? I will have been thrown by an erroneous encounter where I expected one thing to happen and another ensued. It could even have been just one throwaway sentence or phrase that will have sparked another bout of complete self doubt. Rarely it’s years before I circle back, often it’s months, and occasionally it’s days, it really does seem to depend on how well I can repress the feeling. Since realising I am autistic it’s been harder.

I DON’T KNOW HOW TO BE.

My Autism and RSD (rejection sensitive dysphoria) makes it really rather difficult at times; certainly, and especially, for me. I’m not sure others realise quite how much, not even those closest to me, for I try to hide it. I feel if they knew how I reacted or felt, how much their innocent words ripped me apart inside, they would reject me further. At other times my complete naivety can take hold and the world is amazing no matter what. Normally I can manage around three days of naivety and I am sure of myself and Us and I feel still amazingly in love and loved. Then a word is said in a way I don’t quite understand and my world crumbles again. Maybe I didn’t understand or misinterpreted, maybe I didn’t hear, maybe I asked a question that I interpreted as not being wanted and the old RSD hits hard and I am bereft.

I DON’T KNOW HOW TO BE.

When We met I was very highly masking ALL the time. I was beautifully self confident, gently assertive, a proactive go-getter. Someone the world needed to get things done. Oh, that’s so not me underneath. The night We met he walked me home and We talked about wearing masks in different situations. A perfect match made in a sleazy nightclub, on a Thursday Ladies night where entry was free for gals and drinks cheap for all. At the time I was not aware I was Autistic, nor what it was called when I got overwhelmed or found silly little things a rejection of the hugest proportions. Even now, after the naming of the issues, I am still struggling for …

I DON’T KNOW HOW TO BE.

Over thirty years on, We sometimes chat for a while after the light go out. He is suitably soothing if I voice concerns, We often giggle a bit and I enjoy the time We spend not sleeping even though both of us are shattered. Sometimes, after he turns over, I go to cuddle him, playing big spoon. Very occasionally, in doing so I accidentally catch his long hair in my hand and give it a small unintentional tug; it’s happened more than once. His ensuing ‘OW’ is mostly always, extremely disproportionate to the hurt, at least to my ears, his tone harsh and cross, seeming to imply I have done it on purpose. I do what I always do. I freeze. Paralysed with fear. Startled, scared, worried. Rejected.

I DON’T KNOW HOW TO BE.

I tend to immediately apologise and then lie very, very still for a good few minutes controlling my breathing, holding tight onto the tears, waiting for him to say it is okay. He is normally asleep by this point, his exclamation not of merit to him, he meant nothing by it, he was merely a little shocked. But his silence I now interpret as I am not forgiven and I slowly, and deliberately incredibly carefully, so as not to disturb him, withdraw my arm from atop his body and turn away from him to lie on the very edge of the bed, as far away as possible. I want to run, I want to hide, but that will give me away. I want to be elsewhere but have nowhere to go. The thought running dementedly through my head, ‘I don’t know how to be. I don’t know how to be. I don’t know how to be.’ over and over and over. I want him to say it is still fine for me to cuddle him, I want him to let me know it is okay and he isn’t angry. That he forgives me. That he still likes me, maybe even still loves me. But he is blissful unaware of the angst raging inside my head as he slumbers peacefully beside me.

I DON’T KNOW HOW TO BE.

I count my breaths in and out, I squeeze my eyes to still the tears, for at least a couple of hours. Every movement of my body is thought about and executed with immaculate precision. I mustn’t disturb him now, I mustn’t let him see, feel, or know I am upset, I mustn’t do anything out of the ordinary, I must be slow, careful, concise. Each movement must be calculated to be perfect, minimal in effort and disturbance of mattress, sheet and quilt. Air flow carefully controlled, sounds softly muffled. Everything to stop him knowing how I feel. I must disappear into nothingness. I know this is not right. none of this is his fault. It is all mine. I understand my brain is tricking me, it’s still trying to protect me when I no longer need it. I don’t need to do this, but also I must. I try hard to interrupt the thoughts but can’t replace them with anything better. Logically I am sure he wasn’t angry, he didn’t mean to emotionally hurt me, that I am overreacting. Illogically I imagine him asking for a divorce in the morning, having over stepped just one time too often. Trapping his hair under my hand was a heinous crime and I deserve all that may happen next. Eventually I sleep, too tired to not.

I DON’T KNOW HOW TO BE

Being autistic I struggle to know what others mean with their actions, words, inactions, and silence. I try to weave meaning into everything that isn’t explicit. I struggle with implicit. I very, very often get it quite wrong, and this has left a legacy of fear. A terror of making someone angry with my wrong actions and words, often not knowing that those words or actions were wrong or why they were. I have often thought I don’t know how to behave, what to say, how to stand, how to move, how to talk, what to say, what intonation is expected. I have watched others and copied how they are. Not often with great success.

I DON’T KNOW HOW TO BE.

Having RSD adds another dimension to the autism. Not only do I interpret the actions of others wrongly, but then I can react badly to perceived or real slights. Not all of the slights are in my mind, but my reaction is sometimes off. My disclaimer is that there are also times when I am wronged and my reaction is correct. If I am angry, my reaction is most often correct. If I freeze or fawn, it is not.

I DON’T KNOW HOW TO BE.

Sometimes, I am really not sure how We have lasted this long; how he has put up with me; how he hasn’t realised what a freak and fraud I am and must be; how, despite all the love I have for him, he hasn’t rejected me completely because his must surely run out? If I don’t know how to be, WHO can I be for him? Who do I need to be to stop the RSD happening and how do I find out who that is? Every day I wonder at the marvel of his love, at him still being around, at his constant forgiveness of me and my issues. every single day I wonder if today is the day he finally sees through me and dislikes what he sees.

I DON’T KNOW HOW TO BE.

And yet, what is really needed is for me to stop worrying about acting a part and simply just BE. But after 55+ years how do you do that? The acceptance of a loving husband is a start. The acceptance of my adult children would help too. The possibility of experimenting with losing some of the masks and maybe even choosing to keep some of them if they work for me. With love I can cope, with love I can be more me, with love I can grow and learn what this world can still hold for me. And love me he does.

HE KNOWS HOW TO BE.

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