I need to make more of an effort to write in this diary. I’ve had many thoughts about my PhD, work, and life outside both. It has been a difficult transition into a PhD, to say the least. I finished my work, leading a social group for neurodivergent and disabled young people, which I had been involved with for nearly 10 years. I changed my contract at that work to carry on with wheelchair basketball, and the two cancer projects I work on have extended their schedules.

I would love to be able to focus on my PhD fully, but I’m worried that this may not happen until summer. The admin issues around ethical applications based on the changing needs and wants of the funders and the university, has made this period more difficult and longer lasting.

The frustration comes that I am the principal investigator, I have been told time and time again that the PhD is my study. However, people like to add in their two cents, and it is very difficult to know what coins I should be taking from what person, and when I should be taking them. Or should my coin purse be constantly closed with the ability for someone to slip me £5 when needed? This rubs up against my demand avoidance, and triggers trauma from a time questions and comments were always done in bad faith.

I was not expecting to have to inspect myself and my trauma so much going into PhD. I should have known that doing research around an area that is very important to me, and a big part of my lived experience, would be quite emotional. However, I assumed that this emotion would come through when working with co-researchers and participants, what I had not bargained for is these emotions starting so soon and being so strong.

It is also difficult and quite isolating to be doing something so different to everyone else as a PhD student. Many of the other PhD students are doing something outside of their lived experience. I’m in a weird position where I have experience with participatory research, community based participatory research, and participatory action research. I have even published in this area. I am both expert by lived experience and knowledgeable through work experience, whilst also doing my PhD.

And when I do need help, I don’t know what do ask for help with. I’ve not done much of that before, so when faculty say they can help, does that mean I can come into your office and be like “oh God…”? Or e-mail you and ask for something specifically to help? I have asked for help in the university and elsewhere, and I get sent on a wild goose chase where, it turns out, no one knows the answer (“We’ve never thought about this before”). Brilliant.

When people at the university and people at SCDTP say, “You can always ask me,” it’s hard to trust and know what the expectations are of that. Are people just saying that because they’re being polite, or is it genuine? If it is genuine, is there an etiquette to that? I’m a trauma’d out Autistic person trying to work out the neuro-normative, hierarchical structures of academia and where I fit within it and where I can get some kind of support. It’s exhausting.

There is a part of me that is ready and raring to go, pissed off by cisgender neuro normative people and their systems of overly bureaucratic nonsense.