Planning ahead: Dealing with chronic illness

I’ve mentioned previously on the blog that dealing with a chronic illness can make it difficult to plan for the future. I want to talk about this in a bit more detail.
When I talk about planning for the future, I’m thinking about two different things: (1) planning for a specific event: a conference, workshop, or something similar; and (2) working on a project (knitting, workout regime, etc.).

Planning for events in advance is relatively straightforward, but time-consuming. There’s also the risk that, despite your planning, you’ll still feel terrible once the event rolls around and might have to rethink whether or not you can participate.
For example, I’m planning to attend the Science Writers and Communicators of Canada (SWCC) conference in Vancouver in April. I know what the dates are. I know I’ve committed to moderating a session. I know where the conference will be held and will soon know more about accommodations.
I’ll make sure to plan for a light week before and after the conference. This way I won’t tax myself too much in advance, and I’ll have recuperation time built in for when I get back home. The next step is to sort out transport. Usually I try to go with the easiest and most straightforward option to reduce anxiety. As for accommodation, I make sure it’s close to the conference venue so I can duck out as necessary, and ensure there are food places nearby so I don’t have to go far to eat. I also have to over-prepare for the session I’m moderating, and set up a plan of what to do in the event of an anxiety attack or similar mood breakdown.
All of these things require thinking through a typical travel day and a typical conference day, and figuring out how to best manage my illness in that context.
I was reminded of this kind of planning recently after reading an article in Nature about how academics with chronic illnesses manage their illness in order to do their jobs. The article itself made me a bit angry because it seemed as though everyone the author talked to was basically trying to hide their illness as best they could, and not request too many special accommodations, in order to “fit in” to the academic system.
For example:

“Sticking with a research programme…signals to superiors and colleagues, and to others with chronic illnesses, that a diagnosis need not stymie a research career.”

Which means it’s up to the chronically ill person to show able-bodied people what they can do.

“Many subjects thanked Sang for listening to them. “I found that quite upsetting, to think that this is a very articulate, very privileged group of people — academics, people with PhDs — who still felt they didn’t have a voice in academia,” Sang says.”

At some point, we chronically ill people may want to determine how far we’re willing to go either to “fit in” to the academic mold, or to even just attend a conference as I’ve outlined above. We may look at all the plans and compromises we have to make, and feel it’s just not worthwhile.

Planning for projects is more complicated because they involve delayed gratification. For example, whether you’re doing an exercise regime or starting a large knitting project, you have to keep at it but you’ll see the benefits over months rather than days or weeks.
In this case, it’s not whether or not you can do the project. It’s how well you feel while working on it, and ultimately how long you’ll be around to do it.
You may feel fine when you start your project, but you have no idea how your mood will change over the period you’re working on that project. Will you get more or less depressed? Will you have highs? If you get more depressed, will it keep you from working on your project?
The trick in this case is to work on your project a day at a time. Instead of saying: “I’ll have half of my blanket knitted in 6 weeks,” you can say “I commit to working on my knitting every day for half an hour.” This is easier to achieve, and also removes any negative feelings that might arise if you reach the 6-week mark and haven’t completed half of the blanket, for whatever reason.
I’ve done this with cycling. I started cycling on my indoor trainer about a year ago, after not having ridden a bike in many years. At first I just cycled 10-15 mins every few days. Once spring rolled around I started riding outside, getting up to 20km of cycling along an old rail bed trail in our area. This winter I’m back to cycling on the trainer, and am up to 40 mins/13km every second day.
I didn’t start cycling by saying: “I’m going to ride 15km/day by June.” I started it by saying “I’m going to cycle today.” And then another day. And another day. And now it’s been a year. I’m looking forward to getting out on the trails again, but I’m not setting any firm goals. My aim is just to get out and do it, one day at a time.
I think that’s why I have such trouble with New Year’s resolutions – because my life doesn’t work like that. So instead of resolving to lose 20 lbs by April, I resolve to do one thing every day that helps my mental health. Whether that’s cycling, sitting in front of my sun lamp, writing, walking, or knitting. This is a goal I can achieve, and by focusing on the day-to-day I get less overwhelmed.
I’ve had to seriously change my mindset from what I was used to in academia. I had a lot of goals that were time-sensitive and required that I put aside how I was feeling just to meet a deadline. These days I have to think hard about how I’m feeling and whether something will improve my condition or make it worse. It requires that I make space in my day to think about what’s important to me.
I recently read a quote from William James in The Attention Merchants:

“My experience is what I agree to attend to.”

By attending to the day-to-day and planning extensively for future events, I build my own experience of the world as mediated through my chronic illness. It may not be ideal, but it’s what works for me.

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