Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Spoon Theory 101


So what is the Spoon Theory ..?

In 2010, Christine Miserandino was a college student living with lupus. She and her best friend were sitting in a diner, chatting about life in general. When Christine pulled out medicine to take with her food, her friend asked what it was like to have lupus. Christine was shocked. She recalled her reaction:

“I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know ..?”

As anyone living with a chronic illness can attest, taking medicine, crying in pain, or struggling through the simple tasks of life are hard enough. If the illness happens to be 'invisible,' even good friends and family can have a hard time truly understanding what it feels like. Invisible illnesses are those that are not readily apparent and include things like fibromyalgia, lupus, chronic pain, depression or other mood disorders, and chronic fatigue (among others).

What does Spoonie mean ..?

Christine realised that her best friend needed a concrete way to understand what her daily struggle was like. This is how the Spoon Theory was born.

If you assume that the day starts with ten spoons, then a morning for someone working and living with a chronic illness might go like this.

The Spoon Theory

One spoon:

Wake up and get out of bed. This may be challenging because chronic pain makes an early start difficult due to poor sleep and the fact that many pain conditions are worse in the morning.

One spoon:

Brush teeth and get ready for work. This should actually be more than one spoon, as there are numerous actions that make this incredibly challenging, including all of the bending and stretching involved (drying feet, holding one arm up for two minutes to brush teeth). Getting dressed is another challenge, especially if clothes have multiple buttons or difficult closures. Many people with chronic illnesses have to resort to easy-to-pull on clothes with zippers and no buttons.

One spoon:

Make breakfast. Many medications for chronic illness must be taken with food, so breakfast is essential. Trouble is, with so much activity already, a spoonie may be feeling tired to the point of nausea already. If there are children in the house to feed before school or lunches to pack, this part of the day can consume many more than one spoon.

One Spoon:

Drive to work or doctor’s appointments. Those who don’t have a chronic illness take for granted the act of driving, but a spoonie has to consider all steps involved, from actually getting into the car (Is the seat too high ..? Then lifting their bodyweight into the car. Too low ..? Easing into the driver’s seat engages muscles that may already be exhausted) to sitting up straight and focusing on the road. While medications may ease symptoms, they can also cause drowsiness, making attention difficult.

One Spoon:

The above example is a conservative view of what a morning with a chronic illness might look like. In reality, many spoonies use up all ten of their daily spoons in the first few hours of their day. They can “borrow” spoons from the next day, pushing to get through, but they will pay for it in fatigue.

Put even more simply, spoons represent energy. And using those spoons has a real consequence for people with chronic conditions.

Who is a Spoonie?

Healthy people have a theoretically unlimited supply of spoons every day and can take this for granted. Those living with a chronic illness know that their spoons are limited. They must plan their day accordingly, conserving what energy they have when they can. That way they can focus on what is most important for that day. It is important to understand that this dance with the spoons is an ongoing, daily occurrence. There is no break or holiday for those with chronic illnesses or pain. Spoonies cannot 'just do it.' Whatever 'it' is must be planned and prepared for, sometimes days or weeks in advance.

The good news about the Spoon Theory and being a Spoonie is that it can help to not only explain to people exactly what life is like with chronic illness but also to empower the person with a chronic condition. This model though can help a spoonie plan their day around the things that are most important.

Spoon Meme

Why is the Spoon Theory so important?

Having a solid metaphor explain what life is like with chronic illnesses can help you share more with your loved ones. But it can also help you understand how chronic illnesses affect your life.

Again, in Christine’s words:

'It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. The Spoon theory helps loved ones feel that frustration. It also helps loved ones understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons.’

Chronic pain patients, especially, get really good at hiding their pain and finding ways to cope. Sometimes sharing how it affects you can help others better help you. It can also combat the social isolation many chronic pain patients feel. It can help them connect with other patients who feel the same.

If you are suffering with a Chronic Condition and find it hard to deal with it by yourself, then finding friends and those who can sympathise with you couldn't be easier in this day and age. Simply go to your nearest Hospital and ask about leaflets, join Facebook and find groups, any social media can really help. Not only does it make you feel like you aren't alone and people really do understand, but it gives you a sense of power over your life.

Until next Monday,

Bethany S.

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