One thing I didn’t realise before my diagnosis was how much more difficult I find some everyday activities than most people. I was putting so much pressure on myself, because I thought that I should be able to cope better, because everyone else seemed to be. The knowledge that, actually, some things are genuinely harder for me will, I think, turn out to be one of the more positive outcomes of getting a diagnosis. So I wanted to write a post explaining what goes on in my head with two of the situations I face on a regular basis.
Using public transport (mainly trains)
I have a 20 minute train journey to work most days. The planning starts with which train to catch – I can’t catch the ‘obvious’ train as there are too many people I work with who use the service and I need the time to mentally transition from ‘home’ to ‘work’. But then it’s a matter of deciding how able I feel to cope with the sensory aspects of trains – and each train I could potentially catch has its own unique sensory profile, so I need to choose which is going to be the least distressing.
Then, whether I’m commuting or travelling more generally, I get anxious while waiting for the transport to arrive. Questions keep swirling around my head. Will I get a seat (and there are only a small number of seats that are ‘safe’)? If I’m travelling with someone, will we be able to sit together? Will I have to sit next to someone? What if I can only get a window seat and the person next to me won’t let me out? I have to have plans and answers to all these questions before I can even consider getting on the transport.
Making a telephone call
This is one of the things I struggle with the most. There are very, very few people that I am able to have any sort of unscripted dialogue with on the phone. At work I mainly get away with email or, if I can’t avoid calling, an email to set up the conversation so my call is expected. I have three main problems: knowing how to start the conversation, being concerned that I will catch someone at the wrong time and their tone of voice will be hostile (and the wrong tone of voice can be physically painful to me), and knowing how / when to end the conversation. I have tried everything to mitigate these. Nothing works.
If I absolutely have to make a phone call, I will literally write a script and read from it, plus have prepared Q&As. But if something comes up that is not on that script or in the Q&A, that leads to an almost guaranteed meltdown.