Chronic Illness as a Full-Time Job

Last month, a woman I know via X posted that having a chronic illness is her full-time job. She outlined her to-do list and how it has to get done over a week instead of a day, because of her illness. I’ve thought a lot about her statement ever since I read it, wondering if I would say the same about my mental illness.

For those of you who are new to the blog, I have bipolar 2 disorder and generalized anxiety disorder. This means that I have high periods when I think I’m invincible and can do anything and everything. The high periods are followed by a deep depression, the negative magnitude of which is comparable to the positive magnitude of the high. The anxiety means that I’m constantly worrying about things. Did I lock the keys in the car (check three times to make sure I didn’t), did I leave a burner on when I left the house, is the dog’s gait looking a little bit off—maybe there’s something wrong with her, don’t wipe out on the trail given the slippery tree roots and muddy bedrock and rolling pine cones, is that car behind us going to stop in time at a red light, etc., etc.

These illnesses are both mentally and physically exhausting in and of themselves, let alone the time and energy required to manage them. Management means getting outside and being active, as outdoor activity has been shown to improve mental health. Management means doing my counselling homework. This involves a written check-in every day, where I assess my thoughts and feelings in the context of my day and my mood more generally, and figure out what is and isn’t working for me and what I need to do differently to manage my illness. This is essential to planning my days, and works in tandem with mini-check-ins I do throughout the day. For these mini-check-ins I assess what state of mind I’m in (am I able to drive myself to the library or do I need a ride?) and how much energy I have (can I do something like cook a meal, or do I need to take it easy and read a book or go back to bed?). Management means seeing my counsellor every two weeks, and my psychiatrist every three months.

Though I have a to-do list that I’d like to complete, I have to balance getting things done—both in and away from the house—with not overdoing it and paying the price in both mental and physical exhaustion. I’m a spoonie, which I’ve talked about in previous posts. As the original spoonie, Christine Miserandino, wrote: “When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.”

The problem I find, especially when I’m in a deep depression, is that I don’t always see a benefit from the things I’m doing. Right now I get out for a morning hike three times a week and, while I enjoy it, I don’t feel magically better. I just assume that the hiking is beneficial in keeping me from being even more depressed. My check-ins reveal that my bipolar depression is serious, so I do my best to manage it rather than wishing it away. Counselling helps immensely but is mentally exhausting: when I have a session, I know not to plan anything else for that day. One thing that helps is to make space in the margins for writing and reading because, as Virginia Woolf writes in On Being Ill, “In illness words seem to possess a mystic quality. We grasp what is beyond their surface meaning…”. I’m doing what I need to do, despite the lack of tangible benefits. My consolation prize is knowing that things could be worse.

It gets tiresome, yes. Sometimes I want to scream and yell and rant about how unfair it all is, and wish I could return to the brain power and abilities I had 12 years ago. But unfortunately, that doesn’t help—as other people with chronic illnesses can attest to. As quoted in Caroline Paul’s book which I reviewed last week, Jane Brody says, “We all have issues. The secret…is to recognizes one’s issues and adapt accordingly.” And as I said last week, this is something I’m still learning.

So yes, I agree that managing and living with a chronic illness is a full-time job, for all of us who are in that boat. We’re all hanging on, making the most of good days as they come.

Note: Featured image is a sketch by Sierra Lundy

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