I'm Not High Maintenance, I'm Chronically Ill

Everyone likes a “low-maintenance” girl — the girl who can tag along with friends at a moment’s notice, without worrying about the details, the girl who goes with the flow. Well, I’m not her. My whole life I’ve been the girl who packs a whole suitcase for a weekend trip and plans for a thousand possible scenarios. Some call this being “high-maintenance,” but I call it being well-prepared. People poke fun at me for this, until they’re the ones who need an Advil or a snack or an extra shirt and I’m the one who has it. Now that I have a chronic illness, my overpreparation is more than useful — it’s necessary.

Living with a chronic illness requires preparation

Managing my illness requires preparation before doing anything, whether it’s a movie night at home, a quick errand, or a night out. Physically, I have to assess my pain and fatigue levels to decide whether I can do something, and rest and take medication accordingly. Mentally, I have to prepare for heightened pain or the possibility of having to awkwardly leave a situation. In terms of what to bring, I have to pack painkillers, comfy clothes, or whatever else I might need. It’s an elaborate process — but I have to cover all of my bases to manage my illness. So, if that seems “high-maintenance” to some, that’s fine. I’d rather be “high-maintenance” than sacrifice my well-being.

If I’m going to a friend’s house, for example, I bring my makeup mirror so I can sit while I get ready, because I’m not able to stand in front of a bathroom mirror to do my hair and makeup. I keep snacks in my car or purse so I can take my medications that must be taken with food. I tote a special seat cushion with me whenever I’m going on a car ride, to make sitting less painful. I ask people for details about where we’re going in advance, so I can assess whether it will be difficult for me. I Google bars ahead of time to find out whether there is seating available. I tell my friends I need to leave the bar if it turns out seating isn’t available. These are all just examples of steps I take to manage my day-to-day life with a chronic illness.

You need to prioritize yourself when living with spondyloarthritis

Maybe this turns some people off. Maybe I would be “cooler” and “more fun” if I said “yes” to plans without a second thought. Maybe I’d have more friends if my body never sent me home early from a party. Maybe people don't get why I act uneasy entering unknown situations. But unfortunately, prioritizing being liked over managing my illness never goes well. Sure, I could ignore my body’s needs and appear low maintenance, but then all I’d have at the end of the night would be a slightly higher social status and unbearable pain.

As my chronic illness and I grow together, I am learning to put my needs first, even if it makes me appear “high-maintenance” or uptight or uncool. I will continue to make my checklists, Google venues in advance, and show up to sleepovers with a suitcase if need be. Caring for my body is more important than other people's opinions.