Anyone who lives with fibromyalgia has struggled to try to explain the chronic pain and fatigue they experience to their friends and loved ones, and even to strangers.
Explaining fibromyalgia is no easy task. Sometimes just putting into words what you feel is difficult enough, as fibromyalgia often takes your words away. But, even when you can find the words, trying to explain something so foreign and seemingly abstract to someone who has never (and hopefully will never) experience it can be not only difficult, but stressful. To explain fibromyalgia fatigue, you have to 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 that it is a collection of chronic symptoms with no specific underlying pathology. The two key fibromyalgia symptoms are fatigue and chronic pain. People with fibromyalgia may also experience digestive issues, migraines, depression, and problems with sleep.
Knowing the basics doesn’t make understanding the illness any easier, especially when it comes to the fatigue associated with fibromyalgia. Fibromyalgia fatigue is almost impossible to imagine because it is unlike any other sort of fatigue you (or the person you’re describing it to) may have experienced.
How do you describe fibromyalgia fatigue?
A few short descriptions people who live with fibromyalgia fatigue commonly use to describe the fatigue of fibromyalgia include:
- “It feels like you’re drowning, but you keep fighting to stay above water.”
- “It feels like you are walking through quicksand.”
- “It feels like you are carrying around a 100-pound backpack.”
- “It feels 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 they are not situations most people have experienced, so they still require a bit of imagination. That’s the problem with trying to describe fibromyalgia fatigue. No matter how good you are at describing it, you are relying on the other person to use their imagination to understand it.
The key when trying to explain fibromyalgia fatigue to someone who is healthy is to find something they can relate to and then take it a step (or five) further. This way, they may better understand that what you are dealing with is far beyond the feeling they can comprehend.
For example, many people have had a bad flu or mononucleosis (mono) in their life. Ask the person you are talking to if they’ve had one of these, then explain to them that fibromyalgia fatigue feels as if you have the flu or mono, but it’s never gone away and never will. If your friend travels a lot, you might describe it as a jet lag that never goes away.
But, what if that’s not enough? What if the person you are talking to has never had the flu, mono, or jet lag? Then how can you relate the level of complete exhaustion you feel?
Try using the phone battery analogy.
Another way to explain fibromyalgia fatigue is by using the analogy of a mobile phone battery, one that is never completely charged. No matter how long you leave it plugged in (how long a person with fibromyalgia sleeps), it never reaches a full charge. Then once you unplug the phone (wake up) and start using different apps (attempting to do daily activities), each app uses up more battery. Some apps use more battery power than others and before long that battery is completely drained again.
The key to explaining what fibromyalgia fatigue feels like is to make clear that what you are experiencing is far beyond just being tired. Everyone gets tired sometimes, and a good night’s rest usually fixes the problem. Fibromyalgia is different. The fatigue that comes with fibromyalgia is pure exhaustion that doesn’t go away, no matter how much sleep you get. Then, to make matters worse, when it’s time to sleep you can’t. This lack of sleep and exhaustion affects your ability to think, to reason, to perform basic tasks.
Focus your energy on people who understand.
In the end, all you can do is try to explain and hope the person you’re talking to understands what you’re going through. Some people are more empathetic and will make more of an effort to understand. Or, even if they can’t imagine how you feel, they care about you and will offer whatever support they can.
Fibromyalgia is a debilitating condition that is challenging enough to live with, without the worry of how to explain what you’re feeling to others who may never understand. Despite 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 the caring, positive people in your circle to create a much-needed support group that will help you cope on the bad days.
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