I often describe my life as looking very privileged and pretty, but no-one sees the pain. So I know that what I am currently feeling is a first world problem. I am terrified and not coping at all with so much that is unknown. I’m sure that everyone is feeling the same and worrying about the same things. I’m aware that my life appears to be much more comfortable than many and that my worries are less. There is no immediate threat to me or my family or even to my way of life. I know this. I recognise this. I feel ashamed and guilty that I can’t cope because I know that I have far less to cope with than most of the world.
But that is exactly the problem with my autism, my complex post traumatic stress disorder and my PTSD. They don’t know the rules and have no intention of following any. They can’t see my lovely home and they aren’t comforted by my well stocked fridge. They don’t care that I have heating and clean running water and they have absolutely no respect for my bank balance.
Given that my life is normally one of social distancing and isolation you would think that I would be well placed to cope with this. It is true that my daily routine has changed very little. I drink coffee and cry. I run alone and worry. I try to control the shaking and rocking and suppress the rising sobs. I eat and drink with my family and try to be the confident and capable mum and wife that they prefer to see. On the surface nothing has changed, and playing board games and baking bread with my kids is wonderful and unexpected. I am lucky that I am not alone at this time as I know that lots of others are. But I can’t cope with the fear. I can’t bear the unknown. I am terrified of anything that traps me and am then triggered by the trauma that this produces. None of this is a choice. I can’t see this coming and try to avoid it. My body and brain act independantly of any reasonable thought or fact. It takes a micro second for the trigger switch to activate and then I am engulfed and overwhelmed by my nervous system as it spirals out of control and highjacks any stability or sense. Maybe it is my autism or maybe it is my complex trauma. Lots of my fight or flight reactions are comorbid and interwined anyway so it is hard for me to tell where one starts and the other one ends. I don’t think that it matters anyway because the result is the same. The shaking becomes uncontrollable and the tears won’t subside. I hate myself and then I hate everything. I want to like myself and to feel loved and valued but can’t believe that to be possible. I want to run away and hide ; I want to be found and understood. I want to die and to not exist like this; I am terrified of dying and of not existing.
Years of childhood and then domestic abuse have left my brain and body on continual high alert, always expecting to be hurt and rejected, sensing threat whether inside or outside and waiting for the next word or glance that will confirm my worthlessness and will hurl me back off the cliff again. Anyone who experiences CPTSD will probably know about the limited ‘window of tolerance’. Our emotional stability is funneled into such a small chanel that it takes only a tiny amount of rain for the banks to breach and overflow. Sometimes a trickle and sometimes a sunami. But we have no control over the start or the end. No flood defencies.
Now that I also have my diagnosis of autism I can look back and see that emotional and physical meltdowns have been my constant companions and that maybe I am not as irrational and volotile as I have been told.
Being locked down means being trapped, and for me, being trapped triggers trauma. Being locked down means that there is a threat at the door, and that makes me want to run away. Every day not knowing if this invisible disease is creeping closer is an excuse for my brain to remember every punch and kick and slap, every word of criticism and conflict. I hate being trapped and I can’t bare being alone even though my brain and body force me to feel trapped and alone with people or without, with hope or without.
You might think that the repetitive structure of a lockdown would be perfect for someone with an ASD. And it might be for some. As always, I can only know and feel what I do, and am only talking about myself with no reference or judgement of anyone else or their differing and personal experiences. Knowing exactly how the surface of the day will be doesn’t help me, or calm me, or give me the structure that I love. I love spontaneous structure but only if decided and determined by me. I travel and explore at every opportunity because it provides escape. I plan and research and prepare and so although the location is unknown, nothing else is. I like this. If I can keep moving then I don’t have to think about reality. If I am locked down then reality sits next to me and demands my attention. I try to ignore it but it grabs me and clings defiantly. I need to run away, to be free from it but I never am.
You may see privilege and prettiness but you probably won’t see the pain.