It hit me the other day as we were speaking with a therapist, that the outside world has absolutely no idea what it’s like to be chronically ill. She was advising us as we were getting ready to navigate a 504 planning meeting and what she was saying made total sense.
“No one can truly understand what your days are like,” she said to Rosie. “You need to break it down for them as simply as you can. Tell them what it’s like to have a headache 100% of the time. Describe that it’s hard to get out of bed.”
When you live with invisible illness, it’s impossible for the majority of the world to really truly grasp the daily struggle. If you can’t see a physical illness, it’s just not there. Unfortunately, for patients that struggle with Lyme Disease, Rheumatoid Arthritis or Chronic Migraines, the struggle and the illness are real and it’s hard to tell people what it’s like because they just don’t get it.
When I first started writing about invisible illness, I turned to my friend Google for resources. I stumbled across a beautifully written piece from Christine Miserandino called the Spoon Theory. She wrote it as she worked through the struggle of describing to her best friend what it’s like to have Lupus. It’s a perfect piece to describe what it’s like to have any illness or disability and I think it’s a must read if you have someone in your life that is chronically ill (and even if you don’t, it’s a must read so you can learn to empathize with others).
The Spoon Theory simply states that if you’re ill or disabled, you only have a certain amount of spoons to get through the day. Every single thing that you do from getting out of bed, to getting dressed and leaving the house, may take a spoon. Since you only have so many, chronically ill people have to manage their spoons (i.e. time and energy ) to make sure that they have enough spoons to get through the day. And, they have to be sure that they don’t completely run out and borrow from tomorrow’s spoons and start out with a deficit.
To a healthy person, this may not make a lot of sense. We don’t have to worry about running out of spoons, we have an unlimited amount. When we get up in the morning, we don’t have to worry about running out of energy before noon or having a sudden migraine. If we over do it one day, we may be tired the next but not incapacitated. We never have to worry about saving our spoons. Ever. However, if you have a chronic illness, it’s a constant battle.
On the days when Rosie feels great, it’s such a treat to see her interact with friends, try to dance and have a full day. Unfortunately, the next day, she may feel absolutely terrible and not be able to get out of bed. That’s life with POTS. You have one great day then a terrible one the next. It stinks. You are always borrowing from the next day’s spoons. Throw an unexpected migraine in the mix or a day when we’re vomiting blood and you’ve messed with an entire week of spoons.
It’s so hard for a teenager to understand on a good day why she can’t push herself. We had a day like that this weekend. Sunday wound up to be the only day that Rosie felt amazing and as she was finally able to get out of bed last night she said, “I think I overdid it.” She gets the reality of spoon theory, she just doesn’t want to.
Finding balance when you have a chronic illness is difficult. On the good days, you want to live like everyone else and it’s often not possible. On the bad days, you just want to curl up in a ball under the sheets and hope it goes away. It’s hard to find the happy medium so there are more good days than bad but we’re getting there. We just need to integrate the Spoon Theory into our daily conversations to figure out where we’re at during the day.
Summer says
I know how you feel. My husband is always sick (always dizzy and feels like he is going to pass out) but no doctor has yet been able to find out what is wrong with him. It is such a struggle.
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debcb says
So sorry to hear that Summer. Hope you get some answers.
debcb recently posted…Living the Spoon Theory
Doria says
*Sigh* So true. Thankfully you are your daughter’s best advocate and you’re working to get her what she needs and create as positive a life as possible where she does what she’s able to do. Fingers crossed for your upcoming 504 meeting. We’ve done 504s, IEPs. It can be stressful, but you do what you need to 🙂
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debcb says
Our 504 meeting went well but yes, I agree it’s stressful and sometimes hard. We are lucky that we have a really good school district.
debcb recently posted…Living the Spoon Theory
Kendra says
This is a great way of explaining. Hoping for many more good days ahead for Rosie!
Kelley says
So glad you wrote this to share for people to help better understand what you and so many others are going through. You are doing ALL the right things and praying for better days to come!!
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debcb says
Thanks. I do hope that someone stumbles across many of these posts and they have an AHA moment that they’re not alone.
debcb recently posted…Living the Spoon Theory
Brooke says
I can’t even begin to imagine what your beautiful child endures. She’s a strong person and that’s because you are a strong person and are raising her well. You’re both in my thoughts daily <3
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debcb says
Thank you Brooke!
debcb recently posted…Living the Spoon Theory
Ashley says
I’ve never heard of the Spoon Theory, but I am SO glad you shared this today, Deb. I feel like this with my depression on some days, that I only have so much to give, and sometimes – it just doesn’t feel like it’s enough. But if I manage it and pay attention to how I’m doing, it’s better. I hope that the days get easier for Rosie to manage and that she has more good than bad ones!
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debcb says
I completely agree that this applies to depression too. There are just some days when you’re completely out of spoons. Thanks for the well wishes. We hope you have more good days than bad too.
debcb recently posted…Living the Spoon Theory
Carrie says
The Spoon Theory makes perfect sense! I can understand it from when I suffered from major anxiety. Sometimes I could barely get through the day without having a total and complete shutdown, and when that happened that was it for me for the day. I was done with anything and everything. And it is so hard when you have an “invisible” illness to help people understand you and offer support. Keep hanging in there, mama. <3
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debcb says
Yes, it totally applies to anxiety too. We’re hanging in!
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Ashley says
This is very true. Still keeping you guys in my prayers.
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Carly says
I love this, what a great way of explaining it!
Sandy a la Mode says
what a great way of explaining it, thanks for sharing deb!
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Elaine Hodges says
Great information. I completely understand. My brother is clinically depressed and I can see when his spoons run out. Thanks for sharing on the Healthy Living Link Party.
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Nikki Frank-Hamilton says
Deb, this has been really hard for me too. I used to know that if we needed more money I would just work more, if we needed to volunteer-we did, if we were out of groceries I went and got them. I could clean house all day, cook and feel that sleep was a huge inconvenience. Now that I have an auto-immune disease I have to make sure I don’t overdo it. It can make the next day or week miserable. Or I could spend months in bed or in a wheelchair. People don’t understand why I choose not to do things, take long car rides, and why I don’t work. We, as a family, have had to adjust to having less, doing less, and seeing those we care about infrequently. But my kids and husband would rather I do less daily so that we don’t have months of bedrest, doctor appointments and the bills that come with them. We’ve learned the hard way, as I’m sure you have. Your life becomes smaller when you have to live the “Spoon Theory”, it has been my job to figure out how to still have a life that I love. It’s a work in progress. Good luck to Rosie!
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debcb says
You have to put yourself first because if you run out of spoons you can’t take care of yourself of anyone else. You are wise to take care of yourself and blessed that you have a family that understands. I’m sure you have days like we do where you completely overdo it. That’s normal. Thanks for the luck.
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