Living with CFS/ME as a result of having Lyme Disease can be extremely difficult, and it’s just made worse by the fact that many of the people in our lives just don’t get it.
It can be easy to fall into the trap of believing that they just don’t care, but I truly do believe that the number of people who actually don’t care is very low. More often than not the others in our lives would like to help us, and try to help us, but when they fail to see an improvement we’re essentially forcing them to face their own sense of helplessness. It’s human nature to distance ourselves from things we don’t like feeling.
This is also compounded by the fact that this disease is hidden, and more often than not we look and seem fine (because we expend an awful lot of energy trying to).
The Spoon Theory
The Spoon Theory can be an excellent tool in helping your loved ones understand what living with CFS & Lyme is like. It was coined by Christine Miserandino in her essay “The Spoon Theory”[1] . Here’s how it works.
Grab a handful of spoons (12 should do it) and give them to your friend. Tell them that each spoon represents a unit of energy. When you’re healthy, you wake up in the morning expecting to have an endless supply of spoons to do whatever you wish that day. When you have a chronic illness you have a certain amount of energy for that day, and when it’s gone, it’s gone. Spoons need to be replenished through rest, so you need to plan your day according to how many spoons you have on that particular day.
Ask your friend to start to describe a normal day, starting with waking up. Each time they describe an activity, remove one (or more) spoons. You shower and wash your hair? Two spoons. Get dressed? One Spoon. Make breakfast? One Spoon. Pack your bag? One Spoon. You travel to the shops? Three spoons. You unpack the shopping at home? One spoon. Tidy up the living room? 3 Spoons. Ask your friend to prioritise their spoons. Remind them that if they spend that spoon on running an errand, they won’t have a spoon to cook dinner that night. Carry on until your friend isn’t holding any more spoons then let them know that now they need to go to rest. They aren’t able to complete any more tasks today. Explain how living with a chronic illness means making choices and decisions that a healthy person doesn’t have to.
Hopefully at this point, it will be dawning on your friend what it is like living with a chronic condition. Hopefully, they’ll have a little more understanding why sometimes you cancel plans, or withdraw for a while.
Living Within Your Spoons
We’ve all been there – spending spoons we don’t have and paying the price for it the next day or days. I don’t know about you but it’s usually because I’m afraid of letting people down or being a burden. The most important things I’ve had to learn are to slow down and to say no – and it’s a lesson I have to keep relearning.
What do you think about the Spoon Theory? Is it something you’d consider using to explain Lyme and CFS to your loved ones? Let me know in the comments below.
[1] The Spoon Theory
