It’s not a secret that people living with chronic illness face all sorts of challenges — but you might be surprised by some of the decisions that spoonies wrestle with every day.
Before I was diagnosed with postural orthostatic tachycardia syndrome (POTS) —and fibromyalgia, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — I never really struggled with decision-making. My day job as a technical program manager means that I’m constantly making judgment calls and decisions for myself and others and that always came easily to me.
We all make thousands of microdecisions every day, and much of that likely goes completely unnoticed. When you pick up your toothbrush and dispense toothpaste on top, you’re probably not really thinking about it. It’s habit. You’re probably thinking about that awkward thing you said five years ago that is suddenly haunting you for some reason.
What, just me? Anyway…
Until I began living with POTS, fibromyalgia, et al., I took for granted how much time and energy I truly had. I could just… do things. And unless I made a stupid decision like eating an entire bag of Lesser Evil popcorn in one sitting, I didn’t really have to endure the consequences of typical daily activities.
Now that I’m living with chronic illness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie.
These are seven of the bigger decisions that I have to make every day as someone living with chronic illness.
1. Deciding if you’re going to take a shower.
Right off the bat, I’m faced with one of the biggest decisions I’m going to make that day — whether or not I’m going to take a shower.
Never in my life did I think that taking a shower would actually be hard. It’s an exhausting activity that usually requires me to sit or lie down for a while afterward to recover.
Yeah. Recover from taking a shower.
POTS is not a fan of standing, nor is it a fan of heat/hot water. So these days, my showers are as quick and cool as possible — which I suppose is a silver lining for our water bill and hair/skin health.
We have a small corner teak shower stool that I use most days so that I can at least sit down to help with the dizziness factor — highly recommend.
On the days that I decide I don’t have the recovery time or overall energy to take a shower, I give myself a baby wipe bath (which is just wiping myself down with a bunch of baby wipes), apply dry shampoo to my hair, and throw a little cold water on my face.
2. Deciding where to spend and save your spoons.
This starts with that shower predicament — debating if I want to use some of my energy on a shower, or save it for a different activity.
In the metaphor of spoon theory where spoons represent energy and effort, you only have so many spoons per day and you have to choose where to use them.
Sometimes I feel like I can handle a shower, a walk around the block, and sitting at my desk for a full workday. On other days there’s no world where I can do any of those things because I have much fewer spoons to work with.
I’m very lucky that I have a partner who lives with me that can help with things external to myself, but when it comes to the things I control about my own vessel… well, sometimes I haven’t had a shower in three days because I needed my spoons to play with my neighbor’s dog.
Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!
And for the record, I will always choose to put my spoons toward playing with dogs over everything else. Always.
3. Deciding how to answer “How are you?”
You’ve probably seen memes with something like this before:
“Are you OK?”
“Oh god no, but for the purposes of this conversation yes, I’m fine.”
It’s funny because it’s true. It’s such a simple question, but it’s so difficult to know how to answer this. It requires taking into account the audience, the timing, and how vulnerable I feel like being.
Do I lie just to get past the small talk and move on to other topics? Most of the time, yes.
Do I respond with a silly cliche like, “Livin’ the dream” to avoid actually answering? Depending on the audience, I do this a lot, too.
Or is this someone who actually wants to know how I’m doing, and wants an honest answer? And do I think they have 20 minutes to hear that answer? There are a handful of people that I trust and I know fall into this category, so I know I can answer them transparently.
But at the same time… do I really want to get into it? I find more often than not I’m better off saying, “It’s a rough day, but I’ll get through it.”
4. Deciding how to respond to “I hope you feel better soon!”
Sigh. I hate when I hear this — I really do. And I hate myself for hating it. The person saying it isn’t doing anything wrong, they have the best intentions, and they’re making an effort to let me know they care about my well-being.
But I’m not going to feel better (much less “soon”). This isn’t a cold that’s going to work its way out of my symptom and in a few days I’ll be feeling in tip-top shape. This is my 24/7/365 reality.
In this reality, I might feel less terrible, which is the vein I take the sentiment in, so I just say “Thank you!” and appreciate that they care.
Though I do have one friend who also has a chronic illness and when we wrap up conversations she says, “Hope it doesn’t get worse!” or “I’m gonna go scream into a pillow and take my meds — you do the same!” I appreciate that she is always a reliable source of pragmatism.
5. Deciding if you’re actually able to do ‘The Thing.’
“The Thing” could be anything. Maybe you’d planned on going grocery shopping. Maybe you were invited to a wedding. Whatever The Thing is, you have to put serious thought into deciding if you’re actually able to do it.
We make plans with the best intentions, but when you’re living with a chronic illness that can decide at any given moment to zap you of all your energy or leave you with your head in the toilet… sometimes you have to bail on those plans.
Sometimes there are alternatives, and those are the easier decisions to make. If I’d planned to go grocery shopping but have determined I won’t physically be able to, I can place an (overpriced and expensive) Instacart order.
But when those plans involve other people, the stress and guilt felt by having to tell them you don’t feel well enough to participate can be overwhelming.
Much of the decision-making about doing The Thing is weighing the guilt against the repercussions of too much exertion. Would I rather feel terrible about bailing, or spend the next day or two in bed with PEM recovering?
6. Deciding how much social interaction you can handle.
Even in the Before Times, my introverted self struggled with social interaction. I’m not a people person by nature, so it takes a lot out of me to be around others in general. If I knew we were going to a dinner party on Saturday, I would plan to see and speak to no one on Sunday so I could refill my introverted batteries.
And with chronic illness, it’s very much the same — but even at smaller levels. Social interaction could be in person, but it could also be over Zoom, phone calls, texting, social media, or even just answering emails asynchronously.
There are days when I feel particularly lonely (loneliness is a shared theme with many chronic illness patients) and crave some social interaction, but know that I only need a little bit — so I might schedule a “phone date” with a good friend to catch up. For me it’s like getting a craving for stuffed crust pizza — I just want a couple of bites to quell the craving, and then I’m good.
On other days, the thought of having an interaction with another human, synchronously or asynchronously, makes me want to cry. Mental and emotional exertion can be just as impactful as physical activities, so knowing when I can handle those types of interactions is important.
7. Deciding when to ask for help.
This one right here is personally the hardest decision I make each day: knowing when I need to ask for help.
Asking for help professionally? No problem. I refuse to waste time trying to figure something out if I know that I can get an answer from someone to speed things along, finish a task and move on to the next thing. If I don’t need to reinvent the wheel and can find a more efficient solution, I’ll ask for all the help I can get.
Asking for help personally? It’s really difficult for me. I feel uncomfortable, embarrassed, selfish, and guilty. I’m inconveniencing someone else to assist me in doing something that a “normal” person could do on their own.
At work, I might be asking someone to take an hour to help write documentation and that doesn’t bother me in the least. They’re getting paid to do that.
But at home, I might be asking my husband to help drizzle dressing on my salad because my hands are too shaky and I just flung a bowl of cilantro all over myself and don’t feel like coating myself with tahini, too (true story). That’s going to take him less than five seconds. And he’s sitting right next to me.
Yet, the guilt I feel asking for his help sometimes prevents me from doing it. This is something that I know I’m always going to have to work on.
I wouldn’t say that any of this becomes easier over time, but I have learned enough about myself and my condition to make more informed decisions each day.
If there’s anything consistent about chronic illness, it’s that we — the patient — are always going to know ourselves the best.