Public Service Announcement: On taking myself seriously…

…as a disabled, chronically ill autistic person doing their final year of a PhD. And setting boundaries accordingly.

I thought I was sort of kidding when I said my final PhD year would be so tricky that I’d be able to do nothing but eat, (overwhelmingly) sleep, and (occasionally) wake up to write thesis. (And even ‘eat’ and ‘sleep’ aren’t going so well currently.) I don’t think that people have understood what I meant by doing nothing else, though. Or what ‘rest’ means for me, and how much of it I have to do. (I just did some laundry, then had to go to bed for so long to recover that I’ve lost all of today’s functioning work hours.) It’s really looking like my executive function and energy are going to be so tricky, under final year stress, that I won’t be doing much of anything else, if I want to produce a thesis at the end.

And here’s the unhelpful thing. I’m really terrible with boundaries. I will agree to do almost anything when my enthusiasm for a subject or a thing gets going. Example: I said I’d make a list of activist disability resources for an activist group I’m in. A quick task, I thought. Having now spent hours on this and not got very far, I’ve realised too late that volunteering for this was a mistake. But I got excited. I love putting up my hand and saying “I’ll do that!” At the time, I always completely believe I can and will do that thing. I love doing things for other people. I love when the people around me are happy (or, y’know, when they get the opportunity to learn more about structural barriers faced by disabled people in society)…

I’m very privileged. I have a spouse who does almost everything, and other privileges that really help. Still doesn’t change how uneven my rest:work ratio has to be right now. Or the executive function/health issues. It definitely doesn’t help with not being good at boundaries. And various other things that I have to address if I’m going to finish this thesis.

Otherwise, though, I’m setting my boundary here. I suspect that I will not be able to commit to any groups, committees, planning structured activity, campaigning, activism, or anything else that will take time away from my PhD, in the coming year. If I agree do anything, it will be things that are a one-off – low pressure and low activity – on a day when I know I will be able to do them. (And that will be only with groups where my boundaries are respected and understood.)

So this is the plan: Seeing the people who mean the most to me, when I can. Doing a lot of my own level and type of ‘rest’, which is extremely dull and I will have nothing to talk about (so it’s maybe a good thing I won’t be seeing many people). Attempting to respect the way my wonky brain and body are working right now (what they need is what I do). And otherwise: writing the thesis. Even if I only have the energy to do that an hour or two a day right now. (With enough of the ‘respecting of brain and body’ thing, that will get a bit better.)

I’ve already started pulling back (officially) from activities that require anything structured from me (including just things like writing an email occasionally). I will be doing this with more activities.

Yes, people may quietly (or vocally) think I’m lazy. Yes, I may fall off people’s radars, and never get offered opportunities again. Yes, it could affect my employment prospects. But let’s face it – this is what happens to disabled academics.*

[Oh, and I’ve said elsewhere (on Facebook) that I’m no longer answering the questions “when do you finish?” and “what are you doing afterwards?” Thank you for respecting this!]

I’m sorry! I know I shouldn’t apologise, because I’m not in control of this, I didn’t know it was going to happen, and who can fathom the mysteries of non-normative bodies and minds sometimes… But I was going to explode if I didn’t apologise just once. 😀

Endnote: I know how many people will want to reply telling me that this is the situation for all PhD students. I would consider that to be invalidation. (Here’s what I wrote on epistemic invalidation recently.) So I’d rather you didn’t say that (it’s entirely your right to think it, of course). Much more acceptable instead: Cheery waving from afar. Offers to chat to me on (text) chat** occasionally, so that I don’t feel quite so much like I haven’t spoken to anyone all year. Most importantly, understanding that this is a real, serious thing for me, and still being there when I’m coming back to life after I finish. (And because I’m doing this, I will finish.)

Probably won’t be responding to comments on this one. But thanks and I still love you. 🙂

*As always there are many interesting conclusions to be drawn here – normalcy in academia, disability in academia, general conditions in academia… and lots of things about how disabled people have to over-perform to succeed and what happens then… I’m not currently ‘up’ to writing about all of that. But I look forward to a time when I’ve recovered and I am, and can bore you all with all of that again. I bet you do too. 😉

**Face-to-face Skype, while better than the phone, can be dreadfully draining when I’m working. Again, I am sorry.


The Girl OR you don’t have to be ill to suffer from chronic illness

P365, 19th Jan (I’m losing track of what number day I’m on now): The Girl proudly stands next to the coat stand that she put together herself, after going all the way to Oxford to collect it so that she could save the £10 delivery charge… Sadly, although my new XDA Mini S is fantastic and makes me incredibly happy, its camera does not seem as good as the one on my last mobile phone. I shall have to start carrying my real camera around with me again. The XDA is marvellous in every other way, though. I particularly love having my calendar, notes and Word documents all in one place. Now I just have to start remembering that they’re there.

But I digress. Back to The Girl. She’s wonderful, you know. (Nearly as wonderful as my XDA. *serious nod*)

Today we managed to have about a week’s worth of stress in four hours. Her fantastic attempts to help me, by finding out information for me about the hospital to which I’m being referred for ME testing/treatment, were met by me having a helpful panic attack. I’m nice and rational like that. Then we went out for breakfast, got annoyed with each other and came home again without actually ordering any food. I half-collapsed on the way back, threatened to run off and stay with my dad, shouted and cried, and went to bed.

Where The Girl, without a single complaining word, brought me sausages, eggs and buttered crumpets.

I think it must be just as hard to be taking care of someone with a chronic illness as it is to be the person who has it. Maybe it’s harder. I don’t know, as I’ve never been on the caring side of things in this situation, but it certainly seems like The Girl puts up with a hell of a lot. Not only does she have a lot of the same stresses as I do – the ‘will this ever end’ stress, the ‘how do we get to the shops this morning’ stress, the ‘why are doctors so crap’ stress, the ‘Nay’s in pain and it’s making her ridiculously cranky’ stress… But she also has lots of other stresses, like having to make my meals, bring me tea when I can’t carry things, clean up whatever I’ve spilled on the floor this time, sort me out when I’m in floods of tears, drive me places, sit through doctors’ appts with me, help me get out of the shower when I’m worried I might fall, make all the little decisions when I’m too tired or cranky to choose what to have to eat or which DVD to watch, keep the house tidy when I’m not well enough to clean, push me around in the wheelchair when I haven’t got the strength to walk very far, etc, etc, etc, etc…

Things are fairly simple for me, really, at the moment. I’m sitting around, taking things for the pain, waiting for appointments and seeing what happens next. It’s not easy, but I’m dealing with it. The Girl, though, has to deal with all the fallout from all that AND get on with her own life (this afternoon she’s off sorting out Production Week on the show that she’s directing). It must be extremely stressful. No wonder we’re getting a bit annoyed with each other. I’d like to be able to give her some kind of break, but my only choice is going somewhere like to stay with one of my parents, and that wouldn’t be particularly pleasant. Hmm. This must be given some thought.

Anyway. I’d like to take this opportunity to thank her for everything she’s doing for me. I can’t do much else right now, but I can do that.

In other thoughts, I went to book group with former colleagues last night. It was fun: we had some good discussion, and it was nice to see them again. One woman, though, whose sister has ME, now seems determined to ‘help’ me. She’s left a message on my voicemail saying that she’s got the number of her sister’s dietician, that she wants to give it to me so that I can go and see the dietician, and that her sister thinks I can “recover completely” from my illness(es) because I’m so young. Now, of course I appreciate the positive thoughts, and it’s nice of her to want to help. But how do I tell her, graciously, that I really don’t want to do *anything* that people ‘recommend’ just yet, until I have diagnoses and a treatment plan from my own practitioners? Yes, at some point it might be useful to talk about diet – but I will probably get that and more from the ME treament programme I’m soon to be going into, after I’ve had tests and been properly diagnosed. I don’t want to mess with anything right now, while I’m waiting for that. Especially since this dietician thinks changes in diet can cure anything, and I just don’t believe that (I think it can help a great deal, but it’s by no means the only thing, especially when you have more than one complex condition with a range of possible specific causes), and I don’t want to meet with anyone who will cause me more frustration and stress than I need right now. Any thoughts on kindly turning down this lovely woman’s kind but overly pushy suggestion, anyone?