|Spoon Girl from Christine Miserandino’s article, “The Spoon Theory”
Living with a chronic illness is both a curse and a blessing. I say curse because my symptoms can strike at any moment and then I get to play the guessing game, “how long until this bout of symptoms passes?” Sometimes it’s five minutes, sometimes it’s five hours, and sometimes (albeit much less often now that I’m taking fewer classes and getting better at avoiding known stressors) it could last for five days.
While the incessant symptoms often leave me with little to no energy and an overall cloud of “meh” about myself, living with a chronic illness does have its perks. I recently discovered there was a term for all of us out there dealing with some form or another of chronic illness, “spoonie.” “Spoonie” originates from an article written by Christine Miserandino, entitled “The Spoon Theory.” In the article, Christine tries to explain what it’s like living with Lyme disease to a friend who is all too curious and can’t seem to grasp the concept of an invisible illness. I think it’s a really well-said article, so I’ll include direct snippets rather than paraphrasing. You can read the whole article here- ARTICLE
She starts off explaining the difference between a regular person and someone with a chronic illness:
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control…
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
Hopefully this is making sense so far. If you look at the spoons like “energy bars” in a game, you only have so many, and for a spoonie, we lose spoons when we get sick, have a flare up, etc. Christine asks her friend to run through what she does on a typical day, and for each action, there is a spoon-reaction.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
For me, an example of a spoonie moment would be choosing to eat a salad or eat some nuts (which I absolutely LOVE, but my body can’t stand). I’ll eat it, feel great…and then it could be a few moments, or even a few hours later (sometimes it can be up to a day for nuts), and then it’s symptom-central. Sometimes I’m filled with regret that I ate a Ceasar salad when I’m throwing up lettuce and it’s getting caught in my nose. Other times I’ll justify the cost of getting sick or feeling like shit because I was out with friends and my food choices were limited, or that’s just what I wanted to eat.
It largely depends on the context-if it’s a weekend, like today, and I can afford the time to lay in bed and mope all day while running frequently to the bathroom, ok. But if it happens on a weekday, right before class (it’s ALWAYS right before I have to drive to school), then I have to suck it up, hope my medication kicks in quickly, and hope my symptoms react to the meds (which they don’t always do).
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
The truth is, I’m hungry 99% of the time. Like actually hungry. Between all of my symptoms, I’m either in a state of having recently thrown up and hungry, over-indulgence because of said hunger, or the 1% of the time food sounds nauseating because I’m ebbing and flowing between the two former states. Beyond hunger, I don’t think many people understand that chronic illness affects every fiber of your being. After I puke, I don’t have any energy to work out. If I’m having lower GI symptoms, I’m afraid to work out because it could worsen them (yes, I’ve tried to go for a run and then worsened the runs, if you get my shitty joke). It’s a vicious cycle that can expel poor body image issues, confidence issues, and a whole heaping stack of other emotions that I’d rather chuck into a wagon and send it rolling off a mountain. Christine finishes off her article with this:
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
So I started off this post talking about how living with a chronic illness is like a curse. It never goes away, it’s constantly on your mind, and it’s something that affects every aspect of your life (mental health, personal relationships, interactions with the outside world, etc.). Well, I’d like to end on a positive note (something I’ve found helps when you’ve got so much negativity you can’t control in your own body). Here are four things I’ve learned from living with a chronic illness.
1. Being sick all the time makes you really re-evaluate your relationships with others. I have become a better judge of character since my symptoms reared their ugly little heads into my life, and because of that, I lost a lot of friendships I had spent years putting time and effort into. Now, I’m upfront with what I’m able to do, and those that are okay with that (hell, embrace my constant bathroom trips and surprise fatigue) usually stick around, and those that aren’t quickly disappear. I may have fewer bridesmaids than I’d initially pictured when I was in college dreaming up a wedding with rows of sorority sisters in matching dresses, but I’d much prefer having quality friends over any quantity of “friends.”
2. I take time to recharge and rest. Before I got sick I was very “go, go, go.” I finished college in three years and seemed to always be in a rush to land the next big then, whether that was a job, a relationship, or even planning a fun trip. Now I’m much less rushed with life and like now, I’m sitting in a bed, in my pjs, catching up on homework with a glass of tea. A few years ago, old me would have never “paused” on a Sunday to write and reflect. Now I make it a priority to schedule in time to just “be.”
3. Patience. Oh my gosh, I’m probably one of the most impatient people in the world. This ties in with the point above, but to me, idle time is wasted time. However, when I got sick, I quickly learned and became quite frustrated with my inability to rush the duration of my symptoms. It’s quite isolating to be stuck in a bathroom for hours on end, without a phone, puking and shitting your brains out and having no clue when your body will run out of material to process. Since I got sick, I’ve started to become better at just going with the flow and letting my symptoms, a stressful situation, or whatever it may be, just play out and then I’ll try and figure out my next move.
4. Saying “no.” All of these things seem to overlap with one another, but along the lines of doing too much and always being on the go, I used to never say no-a night out, a drink, a job- I ALWAYS said “yes.” At one point in college I was taking seven classes, working two jobs, and on the board of three social organizations. I don’t even know how I did it all, much less got good grades. Since I got sick, I’ve definitely noticed a decrease in my energy level (which I hope will get more normal as I continue to seek treatment for all the stuff that’s going on in my body). It’s kind of like a Superman/kryptonite situation, where I know I can’t do everything. It wasn’t until a few months ago that I made the decision to go part-time in law school. I’ll still be graduating on time, but that’s just because I front-loaded classes before I got sick and took two summer’s worth of credits. See? I over did it then, but now it’s working in my favor.
What I’m trying to say is that being a #spoonie in whatever capacity that may doesn’t mean your life is over. You’ll have to make adjustments, but that’s all. Just be aware of how many spoons you have when you wake up and you won’t come up short when you’re having to decide between being attentive to your partner and caring for yourself.
I still go to school. I still have a job. I still have a normal (ish) relationship with my boyfriend. I still go out and have fun with friends. I still do a lot of what I used to, but in moderation…and sometimes, even with moderation, my body has different plans and I just have to let go and let it happen.
So that’s my two cents on spoonie life…I’m always happy to share how I cope with specific things, so feel free to shoot me an email or IG message. My service dog is an example of this and how his training enabled me to get some of my symptoms under control enough to go back to law school.
Speaking of which, I should go attend to some tax homework.