Things Not to Say to Someone With Fibromyalgia or ME/CFS

When someone we know is sick, especially with a chronic illness, it can be hard to know what to say to them. Often, people want to appear understanding, sympathetic or helpful—only to come off hurting the feelings of the sick person.

Exasperated woman talking to a man at a cafe
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Certain phrases really annoy a lot of us with chronic illnesses such as fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS). While they're usually said with the best of intentions, we hear them so often, and they reflect such a lack of true understanding, that they're like fingernails on a chalkboard.

Some of the things in this article might sound to you like the reactions of someone who is really over-sensitive. Keep in mind that chronic illness inflicts unwanted changes in people's lives and can really do a number on their self-esteem. Someone who's had to give up activities—especially a job—may be deeply wounded by, and feel a lot of guilt over, their limitations.

Five Things Not to Say

Here are five things to avoid saying to someone with FMS, ME/CFS, or other "invisible" illnesses:

  1. "You look great—you must be feeling better." Looks can be deceiving. It's possible, even likely, that we're just getting better about concealing how we feel, not actually feeling better. Or it might be a single good day after a month of horrible days. Either way, this comment—which may have been intended as a compliment—makes a lot of people feel misunderstood. It's a judgment made without an effort to truly learn how we're doing.
  2. "Let's get you out of the house. It'll give you a boost!" Believe me, most chronically ill people would love to get out of the house more. If we're staying home all the time, it's likely that we're not feeling well enough to get out. Being pressured to do something we're not physically up to causes added stress, which makes us worse.
  3. "Are you sure you're not just depressed?" It's true that many of us are depressed, and even if we're not, the symptoms can be similar. However, depression alone can't explain the broad range of symptoms we experience, which is often several dozen. This comment discounts the validity of our physiological ailments. (Plus, depression is a very real and serious illness, so the phrase "just depressed" is never appropriate.)
  4. "I know how you feel; I get tired, too." If you're so tired that you feel on the verge of complete physical, mental, and emotional collapse, you might know how we feel. Otherwise, statements like that make it seem like you're trivializing an illness that's much more than being tired. If you want to appear understanding, you're better off saying something like, "I've been really exhausted lately. I don't know how you live like that all the time."
  5. "If you'd (exercise more/lose weight/eat a better diet/get back to work) you'd feel better." While exercise or dietary change to help some people with these conditions, the wrong changes can make us much worse. We know our bodies best, and we need to research those changes for ourselves. Losing weight is extremely difficult for someone who can't be very active, and being told to do so is hard on the self-esteem. Plus, there's no evidence that losing weight would help much anyway. When it comes to "getting back to work," again, that's something most of us would love to do but can't.

In the end, it's best if healthy people accept that they don't really understand the illness and can't solve the problem with well-intended advice.

So What Should You Say?

Now that you have an idea what topics to avoid, here's a look at some things that would be especially welcome by people with these conditions.

  1. "If you're not up to going out, we can just get together and (talk/play cards/watch a movie)." This shows that you understand the limitations of the illness and gives the person an alternative to canceling plans that may better accommodate their symptoms.
  2. "Let's do our grocery (or Christmas) shopping together. I'll pick you up." Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car or trekking back across the store for a forgotten item on the other side.
  3. "How much are you up for today?" This shows that you understand energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations.
  4. "How are things going?" This is better than asking "how do you feel?" It opens the door to all aspects of life, instead of just physical well-being. Most days, I don't feel that great, but other aspects of my life might be going really well.
  5. "Can I (give you a ride/help with that/etc.)?" This works better than something like, "Do you need me to...." because it shows a willingness to help without implying the person is incapable or is a burden. "Let me know if you need anything" also seems like an offer, but most people don't ever take someone up on that offer. Try offering something specific that you know they need, or that you're especially well-qualified to help with.

If you're willing to put in the effort to understand your friend's/family member's illness and limitations, thank you! Chronic illness can be lonely, and having supportive people around us is invaluable.

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