Why I don’t like “The Spoon Theory”.

“The Spoon Theory” is a popular article among those living with a chronic illness; however, I find it generally offensive. Yes, it may help to explain to those unfamiliar with my daily life the amount of time I have to spend daily managing my illness, but it comes across as attention-seeking and dramatic. My life has been full of more than enough drama due to Behcet’s for one lifetime, and I don’t care to view every task, no matter how mundane or meaningful, through the eyes of Behcet’s,

Behcet’s isn’t my entire life, it is simply one facet of my life. Spend a day in my shoes, and you will quickly realize that I spend my days juggling a thousand other responsibilities. Yes, I have to follow doctor’s orders, take my meds, manage my primary and secondary symptoms, and deal with chronic pain, but I cannot allow that to control my life; I choose to be in charge of my illness, instead of letting it dictate my life. I don’t want to wake up and put limits on my day – I want to see how much I can squeeze into it. I have spent months at a time on bedrest; I have been hospitalized for weeks at a time; I’m constantly changing meds and adjusting to new side effects; I know what it’s like to have your life stopped by an illness. I have tasted that, and I cherish each day that I do not have to endure those conditions.

 I go about my life, and Behcet’s conforms to my lifestyle. Yes, I make accommodations, but I do everything I can to not allow one facet of my life to affect the others. Obviously, if I’m recovering from surgery, I will have limitations. The first month on an immunosuppressant requires me to limit my activity. But the rest of the time, I pack up my meds and go about my business. Flares or no flares, I have things to do. People rise to the expectations that you set for them – I choose to keep expectations for my life high. 


3 thoughts on “Why I don’t like “The Spoon Theory”.

  1. Alison,
    What a beautiful post. And what an even more beautiful attitude. I’m not going to lie, there are days that the Behcet’s or the epilepsy or both really get to me and I fall into that self-pity “poor poor me” mode. But I do agree with you. I try to be as independent and “normal” as possible- although my day-to-day normal wouldn’t suit well for some people, I had a friend tell me long before I was diagnosed and my health spun out of my control, that “we don’t know what we’re capable of, until we have to be capable of it.”

    How do you feel if someone notices your physical symptoms? How do explain them? I’m never sure where to go on those occasions, especially from people who CONSTANTLY ask about my disease, even before they ask about me. They see the skin sores, the wild looking stretch marks, or my poofy face, and then I feel like no one sees a person anymore, they just see the disease. Has this ever happened to you?

    Get over you cold soon!

  2. Thank you, Nikki. I definitely have the “pity” days, but I try to remember that the rough days pass, too. I’ll write another post about how I react to questions or comments about my symptoms soon – I ended up with the flu last week, so I’ve been playing catch-up all week this week!

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