Chronic Illness and Energy Limits: Helping others understand : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.

Chronic Illness and Energy Limits: Helping others understand

by RNE submissions on 06/02/17

Chronic Illness and Energy Limits: Helping others understand

By Joanna Mechlinski

                                               June 1, 2017

The average person doesn’t usually think about the amount of energy it takes to do basic things. Essential tasks such as taking a shower, preparing a meal or running an errand are so ingrained in our everyday lives that we simply do them, like breathing.

Yet when a person lives with a chronic illness, no longer can anything we taken for granted. Due to ever-present pain and exhaustion, the amount of energy you have each day is limited. Some days, thanks to flare ups – or overextending yourself the day before - that precious amount can be curbed even further. Suddenly all the things you once did easily require a great deal of planning and thought. What if you simply run out of energy before you’ve completed everything that needs doing? If you can’t delegate, then you need to prioritize.

How on earth do you make a healthy person understand this unusual way of life? Sure, you can try to explain how you feel and the kinds of choices you are forced to make each day. But while your audience may nod, saying they understand – and maybe even truly believe they understand – the truth is that no one does, not unless they live that way themselves. But what kind of metaphor can convey your reality?

The “spoon theory” was born in 2003, when Christine Miserandino wrote an essay for her website  She recalled trying to explain life with lupus to a friend. As the two were sitting in a diner, Miserandino was inspired to use spoons in an impromptu metaphor. She held out twelve spoons, explaining to her friend that each one represented a unit of energy. Each daily task required at least one spoon, if not two or more. Once the daily allotment of silverware was used, that was it. There is no magical “store” to pick up additional spoons. And if you attempt to “borrow” spoons from the next day, that means you will be that many short come tomorrow for the next round of tasks.

By putting the situation in a simple yet more tangible example, Miserandino was able to make her friend better understand the challenges of those living with chronic illness. Suddenly the array of spoons in her hands – more than any one person would typically need for the usual purpose – seemed stark and limited. Now it was more clear why a person living with chronic illness might have to take a nap in the middle of the day or turn down a social outing. Yes, even fun things like meeting a friend for lunch or going to see a movie use up spoons! There's the stress – both physical and mental – of actually traveling to the location. Then, depending upon the particular person, there can be the stress of navigating through crowds, sitting amidst noise, climbing stairs, having to sit for too long and a myriad of other things that the average healthy person wouldn't even think about. Unfortunately, a “spoonie” doesn't have that luxury.

But ironically enough, it isn't just the healthy who can benefit from the spoon theory. We who are living with finite energy can be aided by this very simple and tangible reminder not to try overextending ourselves, that our resources are more limited than we might want or need them to be. Even those of us who have been living in this mindset for years – or perhaps all our lives – can forget when things need getting done.

With all this in mind, you'll never look at a spoon in the same way again, will you?

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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