Explaining post-cancer fatigue to family and friends can be frustrating, but using a visual example might help them understand.
Bonnie Annis is a breast cancer survivor, diagnosed in 2014 with stage 2b invasive ductal carcinoma with metastasis to the lymph nodes. She is an avid photographer, freelance writer/blogger, wife, mother and grandmother.
Trying to explain post-cancer fatigue is frustrating! When you don’t necessarily look sick, people don’t expect you to act like you’re sick. But looks are deceiving and aren’t always a good indicator of health. So how do we help others understand? I’ve found a good way and it seems to work flawlessly.
A few years ago, I read an article written Christine Miserandino called The Spoon Theory
. Ms. Miserandino suffered from Lupus and had grown tired of trying to explain her health issues to family and friends. While at lunch one day, she was asked by a friend how she was feeling. The friend really wanted to understand what life was like living with chronic illness. So, she tried to think how she could help her friend grasp the effects of her disease.
Ms. Miserandino got creative. While sitting at the table, a spoon caught her eye. She took the spoon in front of her and held it in her hand. Then she gathered spoons from nearby tables. She extended the group of spoons toward her friend and as she did, said, “Here you go, you have Lupus.” Her friend received the bouquet of spoons although she was confused. Ms. Miserandino explained that the difference between being sick and being healthy is having to make choices or consciously consider things when the rest of the world doesn’t. She explained healthy people take life and all its choices for granted while the sick do not. To illustrate, Christine told her friend she would lose a spoon for each choice she made throughout the day. The spoons represented energy. She asked the friend to count the number of spoons in her hand and to remember how many she had. Next, she told her friend to plan her day but in the planning, she needed to consider the spoons. Each day would start out with 12 spoons. As a decision was made requiring the expenditure of energy, the friend would surrender one spoon. Then she had the friend explain how she would start and progress through her day. Getting out of bed, cost one spoon. Taking a shower and getting dressed, another. Making breakfast cost another spoon. Pretty soon, the friend was getting the idea. With only 12 spoons worth of energy units a day, the supply would be depleted fairly quickly. Wise choices would allow the number of spoons to stretch throughout the day. But there was never a way to gain more spoons.
When I read the story, I had to laugh. I could only imagine sitting in a restaurant with a handful of spoons as a friend tried to help me understand her health issues. But, the more I thought about it, the more it made sense. Post cancer fatigue isn’t very different from Lupus. If the spoon theory worked for Ms. Miserandino, it could surely work for me. If I could help my family and friends understand I don’t quite have the energy I used to have before cancer, it would be a blessing. Then, they might understand why I weigh decisions carefully, especially those that require physical effort.
There are days when I really struggle. Sometimes, it feels like I’m a deep-sea diver wearing a heavy lead suit. As I try to cross the bottom of the ocean floor, it takes every ounce of energy I can muster to just lift my foot. Then, there are days when I have more energy than usual and it doesn’t take much effort at all to function. I never know what type day I’ll experience when I wake up. I always hope it will be a 12-spoon day, one where the last spoon is used at bedtime, but I never know ahead of time. Learning to make wise choices about what I do and don’t do throughout the day has been a challenge. I’m still learning the value of the spoons. Very physical activities I could do easily before cancer now, I now reevaluate. I’m learning to listen to my body. It tells me how I’m doing. I have learned I have the most energy early in the day, but it usually wanes as the afternoon approaches. I try to tackle the more strenuous activities before noon, that way, I can accomplish my tasks when my energy level is high.
Ms. Miserandino’s Spoon Theory is a valuable teaching tool for helping others understand post cancer fatigue syndrome. I’m sure there are some who feel it’s not a real malady, but I can assure you, from my own personal experience, it is very real and a constant, daily struggle. Ms. Miserandino is a pretty smart cookie to come up with her theory and I offer her a debt of gratitude. If you’re considering using her theory to help explain your post cancer fatigue, hold your spoons carefully and don’t drop them. You can’t afford to lose even one single spoon’s worth of energy.