What Radical Self-Care Really Looks Like When You Have a Chronic Illness

Self-care is a huge buzz phrase right now. If this year had a motto I am pretty sure it would be “Practice Self-Care.” Election got you down? Practice self-care. Triggering news cycle? Practice self-care. Overwhelmed about the holidays? Practice self-care.

I appreciate the mainstream emphasis on self-care, but as a person with several chronic conditions, self-care is nothing new. There are many things I do every day to take care of my mind and body to stay as close to healthy as possible. So much so, that after years of being sick, these activities stop feeling like self-care and simply feel like the normal routine of my life. That is, until they are taken away.

Earlier this year my husband got a new job. This new role allows him more freedom in his work, particularly where he works. Before, he had to be in the office from 9 a.m. until at least 5 p.m. Now he has the flexibility to work from almost anywhere, including from home. Awesome, right?

I wish.

Here is the deal, I also work full-time, but my schedule is 8 a.m. – 4 p.m. As such, I am used to getting home at least an hour before my husband. I never thought much about that hour, it was just how our schedules worked out. Now though, when I walk in the door he is right there, doing all the things that were once neatly confined to his office. My once quiet house is filled with both the physical and mental byproducts of a human using space. That hour, that beautiful, blissful, quiet hour, is gone.

There wasn’t anything particularly interesting about what I would do with my alone time, rather it was special and significant because it was just for me. I would lazily unpack my bag from work, meander into my bedroom to change into leggings and a sweatshirt, grab any mail/packages that arrived on the front step, let my dogs out (and back in), and then settle into a comfortable spot on the couch, cuddle up with my favorite blanket and heating pad. Every moment was mine and mine alone.

As a classic extrovert, you can imagine my surprise after realizing how much I missed that time. Ironically, it was one of the most significant resources in my self-care arsenal. It fueled my body and soul to have that time to exhale, evaluate, relax and recharge.

Missing out on it has me feeling all sorts of things. First, I am annoyed. The laptops, the charging cords, the cluttered kitchen, the scattered papers and notebooks, the EDM music playing… it’s a lot going on all at once. It’s overwhelming and tries my patience. Second, I feel guilty. My husband is my favorite person in the whole world. I am immensely blessed to have an awesome, wonderful, hardworking, loving husband who daily dedicates himself to serving our family. How selfish am I for wishing he would go away! Finally, I feel sad. Before getting sick I can’t imagine ever needing to recharge after an eight-hour workday. At 24, I would bounce from one activity to another without so much as a yawn in between. Now, I am deliberate with my schedule and commitments. The reason we don’t do things until after he gets home isn’t just because of his work schedule, it’s also because of my schedule. Sadly, needing space between activities is yet another reminder that my body has limitations.

I finally got the courage to mentioned my dilemma to my husband a few nights ago. I shouldn’t be surprised at his response, as I said before he is a complete gem, but he was even kinder than I could’ve imagined. He said he absolutely understood where the new schedule was difficult for me. He offered to work from a coffee shop or downstairs if he was going to be working remotely. He assured me he didn’t take it personally that I needed time and space – he is an introvert, he gets it. He also told me I shouldn’t be afraid or timid to ask for what I need, he wants me to be and feel my best, and taking care of myself is paramount in that equation.

Yesterday when I walked into my quiet, still house at 4:17 p.m., I decided that maybe the most radical self-care isn’t actually an activity, but rather recognizing what we need, having the confidence to ask for it and surrounding ourselves with people who are supportive.