Anyone living with fibromyalgia had trouble trying to explain the chronic pain and tiredness they experience with their friends and loved ones, and even strangers.
Explaining fibromyalgia is not an easy task. Sometimes simply putting into words what you feel is very difficult, since fibromyalgia often takes away your words. But even when you can find the words, trying to explain something so strange and seemingly abstract to someone that never (and hopefully ever) experience, it can be not only difficult but also stressful. To explain the fatigue of fibromyalgia, you must first understand what fibromyalgia is.
What is fibromyalgia?
Fibromyalgia is a debilitating disorder that is estimated to affect more than 10 million people in the United States. Fibromyalgia is a complex disorder in the sense that it is a collection of chronic symptoms without a specific underlying pathology. The two main symptoms of fibromyalgia are fatigue and chronic pain. People with fibromyalgia may also have digestive problems, migraines, depression and sleep problems.
Knowing the basic concepts does not facilitate the understanding of the disease, especially with regard to fatigue associated with fibromyalgia. The fatigue of fibromyalgia is almost impossible to imagine, because it does not resemble any other types of fatigue that you (or the person you describe) have experienced.
How do you describe fibromyalgia fatigue?
Some short descriptions of people living with fibromyalgia fatigue commonly used to describe fibromyalgia fatigue include:
- “It looks like you’re drowning, but you’re still struggling to stay out of the water.”
- “Sounds like you’re walking on the quicksand.”
- “Looks like you’re carrying a 100-pound backpack.”
- “It looks like you’ve been awake for a week, and no amount of sleep will allow you to catch up.”
These descriptions are quite visual, but there are situations that most people have experienced, so you still need a little imagination. This is the problem in trying to describe the fatigue of fibromyalgia. No matter how good you are at describing it, you trust the other person to use your imagination to understand it.
The key to trying to explain fibromyalgia fatigue to a healthy person is to find something that you can relate to and then take one more step (or five). In this way, they can better understand that what they are dealing with is far beyond the feeling that they can understand.
For example, many people have had a bad flu or mononucleosis (monkey) in their life. Ask the person you are talking to if she has had one of these symptoms and then explain that fibromyalgia appears to have a flu or a mononucleosis but it has never disappeared and will never be. If your friend travels a lot, you could describe him as a jet lag that never disappears.
But what if this is not enough? What if the person you’re talking to has never had the flu, monkey or time zone? So how can you relate the level of total exhaustion you feel?
Try to use the phone battery analogy.
Another way to explain fibromyalgia fatigue is to use the battery analogy of a cell phone, which is never fully charged. No matter how long you leave on (how much a person with fibromyalgia sleeps), it never reaches a full charge. Then, when you disconnect the phone (wake up) and start using different applications (trying to perform daily activities), each application consumes more battery. Some applications use more battery power than others, and soon the battery runs out.
The key to explaining what fibromyalgia fatigue feels by making it clear that what you are experiencing is much more than just being tired. Everyone gets tired sometimes, and a good night’s rest usually solves the problem. Fibromyalgia is different. Fatigue that accompanies fibromyalgia is sheer exhaustion that will not go away, no matter how much sleep. So to make things worse, when it’s time to sleep you can not. This lack of sleep and exhaustion affects your ability to think, reason, and perform basic tasks.
Focus your energy on the people you understand.
In the end, all you can do is try to explain and expect the person you are talking to understand what is going on. Some people are more empathic and will make more efforts to understand. Or, even if you can not figure out how you feel, they care about you and offer all the support they can.
Fibromyalgia is a debilitating condition that is challenging enough to live without the worry of explaining what you are feeling to others who may never understand you. Although how difficult it can be to explain fibromyalgia , there are people around you who want to learn, and you should focus your limited energy on maintaining those relationships. Surround yourself with positive and caring people in your circle to create a much-needed support group that will help you deal with the bad days.