The Question I Hate Being Asked as a Chronically Ill Person

“So, what do you do with your day?”

“How do you fill your time?”

These questions, or some variant of these, are something I hate being asked as someone living with a chronic illness. I get asked this a lot by family, friends, therapists and even by people who barely know me. I’m sure they are well-intentioned and probably curious, but being asked this makes me feel like my constant struggle just to get through the day is invalid. It makes me worried you think I’m lazy and makes me feel like I should be trying to do more, even though in reality I’m probably already doing more than I should. It emphasizes the pressure we all feel, healthy or not, to be constantly doing and achieving.

I understand why people ask. Before I got ill, I probably would have asked this question too. I would have found it hard to comprehend how someone can pass the time stuck at home all day, every day, when I was always so busy. I remember a time when I was sick for three weeks and I was practically climbing up the walls by the end. Those three weeks felt like an impossibly long time to be ill. But now, I have been ill for over three years and it has become my “normal.”

Being chronically ill is a full-time job without evenings, weekends and holidays off. I think what people struggle to understand is that, when everything is exhausting and you constantly feel unwell, it takes a long time to do anything. Most days, it takes me ages to summon the energy just to get out of bed, let alone get washed and dressed. My day doesn’t often start until midday, and by then I’m pretty exhausted from the effort of getting ready. The need to take regular rests means it’s actually hard to find the time to do things I need to do, and some days I’m simply not capable of doing anything beyond surviving. I have my own routine I tend to stick to, health permitting, and that helps me to feel like there are distinct stages to the day. It also helps me to manage my energy and make sure I don’t do too much. It’s generally the days that throw out this routine that cause me to experience a crash, such as friends visiting or doctor appointments.

To those who ask these questions, I’m not saying you’re to blame — I’m probably just projecting my own insecurities — but I don’t think it is something you’d normally ask a healthy person. Perhaps instead, you could ask what I do each day to enjoy myself, and try not to judge if it’s only something as simple as watching a good TV show, or you could ask what you could do to make my day easier.