How Can I Explain Chronic Fatigue Syndrome?

People Just Don't Get It!

Chronic Fatigue
Jamie Grill Collection/The Image Bank/Getty Images

Question: How Can I Explain Chronic Fatigue Syndrome?

I run into a lot of people who think they know what chronic fatigue syndrome is, but they really don't. They think it's just getting tired a lot, and they say things like, "Yeah, I think I have that, too. I'm just too busy to get enough sleep."

How can I help people understand that, even if I slept for 20 hours a day, I'd still be exhausted? How can I get them to understand that I also have dozens of other symptoms and I'm seriously limited in what I can do?

Answer:

Your experience with other people is extremely common. When people hear the term "chronic fatigue syndrome," it's pretty logical for them to assume it's a fancy description for being tired a lot. In our modern society, most people feel fatigued from time to time – fatigue is one of the top complaints doctors hear.

In reality, we know that chronic fatigue syndrome is a complex and potentially debilitating illness. When you're explaining it to people, it helps to keep things simple and relate your symptoms to common experiences.

You might want to have a brief explanation for most people, and a longer one for the people closest to you.

Probably the simplest way to explain chronic fatigue syndrome is:

  • "It feels like I have the flu all the time."

Most people are familiar enough with the flu to get this. It conveys, "I'm not just tired, I'm sick."

You can elaborate briefly by listing some of your flu-like symptoms, such as body aches, periodic low-grade fevers, sore throat, and being too exhausted to move.

While the flu comparison covers a few of your symptoms, you'll have to find other ways to help someone understand things like brain fog, post-exertional malaise, and flares/remissions.

Explaining Brain Fog

To explain your brain fog or cognitive dysfunction, remember to use common experiences to help.

Just about everyone has gone to get something and forgotten what that something was, or lost their train of thought in the middle of a sentence.

You can use things like that, then explain that it happens to you all the time.

Using the term "brain fog" regularly around friends and family will get them familiar with it. It's a pretty descriptive term on its own, and a little explanation (such as "My brain is fogged in today") can help them understand your mental glitches.

Explaining Post-Exertional Malaise

This symptom may be the hardest for people to understand. In someone without chronic fatigue syndrome, exercise increases energy. It's such a well-known phenomenon that people often tell someone with this illness to get more exercise so they'll feel better.

Since post-exertional malaise means you'll have less energy, it makes sense that people don't get it.

Again, it can pay to go back to the flu description, with something such as:

  • "Think about the last time you were really sick with the flu (or strep throat, or mono) and how it wore you out just to walk down the stairs. That's what exertion does to me – it wears me out and makes my symptoms worse."

    Post-exertional malaise is a tough symptom to wrap your head around, even when you're experiencing it.

    Ups & Downs

    If your chronic fatigue syndrome has flares and remissions, that's another thing that can be really confusing to people. Usually, people think of illness as a constant thing, so they often don't get how you can be up and active one day (or minute) and bedridden the next.

    The best way I've found to describe this is:

    • "Chronic fatigue syndrome symptoms come and go, kind of like in multiple sclerosis."

    You can also compare your flares to a roller coaster, explaining how you often don't know when the next drop is coming, which really makes it hard to plan anything. Also, let them know what kinds of things (exertion, stress, etc.) trigger sudden symptom flares so they'll get it when you're suddenly much worse.

    A More Physiological Explanation

    On occasion, you may need someone to understand your illness in medical terms. With chronic fatigue syndrome, it's easy to get bogged down in explanations of specialized immune-system cells and neurotransmitter function which, for anyone but a doctor, are probably of little help.

    A simple way to explain what's going on in your body is:

    • "My immune system is stuck in overdrive like it's trying to fight off a nasty virus, and it drains a lot of my body's resources. My nervous system is also hypersensitive and over-reacts to all kinds of things."

    You can also tell them that many researchers call chronic fatigue syndrome a "neuroimmune" or "neuroendocrine immune" illness because of its complexity and the involvement of multiple systems.

    If someone wants in-depth medical information beyond your ability to explain, you can point them to these articles:

    You have your own unique set of symptoms, so you'll need to customize your explanations to fit your experience. It's a good idea to think about it ahead of time, so you can give someone a decent answer even when your brain is foggy.

    Continue Reading