The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 06 December 2015 06 December 2015
Is there such a thing as procrastination for those with Chronic Fatigue Syndrome (CFS)/ Fibromyalgia (FM)? Do not yell all at once. For most people procrastination is a bad thing—but does it exist for us?
Having a chronic illness can force changes in the way we approach the things we want to do. No longer can we count on our body to do what we tell it to, when we tell it to do it. What is usually thought of as procrastination in healthy people can simply be in the CFS/FM population the inability to complete a task because the energy needed is simply not there.
From CFS/FM patient experience of more than 30 years: all too often when patients are having a "good day" they will subscribe to the philosophy of "I'm going to do everything I can because I don't know when I'll have another good day."
While this attitude is understandable, it is NOT helpful and can cause damage. It puts too much stress on the body—too much activity equals dead in bed for days or weeks. Using more energy than necessary ends up being counterproductive since working one's body or mind to extremes actually consumes more energy. It is much like gunning the engine on a car—one uses more gas but doesn't get there much faster. When one drives slowly and steadily and doesn't gun the engine, it uses less gas, and you still get there without wearing out the car. The analogy works with our bodies. Don't gun your body. It will help limit the number of crashes. Working towards a better balance between trying to live life and living with a chronic illness (i.e., recognizing triggers, limitations and other aspects of your health) will promote a better quality of life. It may take some practice to find this sweet spot but it is worth trying.
It is because of the crashes and the lack of predictability for accomplishing a task that many CFS/FM patients first prioritize the most essential tasks for their "good time". Next in priority are those tasks that aren't essential, but still important. But these "secondary" tasks will often get pushed down the list when new essential tasks come up. On a good day it's important to pick the one or two essential tasks, rest, and then see if one can accomplish anything more without "going down-hill." So patients are frequently forced to start, stop, prioritize and re-prioritize.
Of course, there are times when even essential tasks are too difficult to accomplish because one is simply too sick. At least the decision is made. Harder to navigate, when one is in a relapse, is the uncertainty of whether, tomorrow, one will be able to get to the doctor's appointment, or get out to buy food. This uncertainty leads to "anticipatory stress", which can make the illness itself temporarily worse.
The calculation frequently has to be made: how much do I need this to be done now; can I actually do it without really harming myself; can I get away with it with an "acceptable" pay-back.
Can all of this be called "procrastination"? No. It is the reality of living with a severe or even moderate chronic illness. Most of what healthy people call life is curtailed, and CFS/FM patients are forced to live a scaled-back existence in which time is slowed and the 2 lists of "essentials" and "necessary" are done one or two steps at a time, one day or a few at a time. And then, once and awhile, something creative or fun.
Here is where patients can help themselves—learn to practice the B word—BALANCE. It seems to be difficult for some people to manage because they are not tuned into their bodies. They can't read the signals their body sends when they have hit their energy limit, and should stop activity. (Easier to say than do.) Over the years, many patients have been told to "just learn to live with the illness" and as a result they have learned to tune-out their bodies and ignore any signals. Much like learning a language, it starts with letters, then words, then sentences, then paragraphs. Patients who are tuned into their bodies speak that language and pick up all signals, and they listen. (This does not include folks who are hypochondriacs.)
A serious chronic illness actually provides some good life lessons. (Wish they could have been learned some other way!) Patients have had to stop and assess their lives. On the positive side, they must learn to make more careful and deliberate choices as to what can be done or not, learn to conserve energy, set boundaries by learning to say no, and not take everything for granted. They also have to make a conscious choice who they want around them cutting-out or limiting exposure to toxic people. Those are excellent skills to have.
So, does procrastination live in the CFS/FM world? Procrastination is a luxury most patients don't enjoy.
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.