What "We" Don't Want To Hear

What "We" Don't Want To Hear

Certain phrases really annoy a lot of us with chronic illnesses such as Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). 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 chalk board. Here are some things to avoid saying to someone with FM, CFS/ME, or any other invisible illness:

You look great - you must be feeling better.

We're likely getting better about concealing how we feel, not feeling better. Or it might be a single good day after a month of horrible days.


Let's get you out of the house. It'll give you a boost!

If we're staying home all the time, it's probably because we're not feeling well enough to get out.


Are you sure you're not just depressed?

If only it were that simple! Yes, many of us are depressed, and even if we're not the symptoms can appear similar. However, depression alone can't explain the broad range of symptoms we experience (often several dozen of them at a time.) Plus, depression is a very real physical illness, so the phrase "just depressed" is inappropriate either way.


I've been really tired lately, too. I know how you feel.

If you're so tired that you feel on the verge of total physical, mental and emotional collapse, you might. Otherwise, statements like that make it seem like you're trivializing an illness that's much more than being tired.


If you'd (exercise more, lose weight, eat a better diet, get back to work) you'd feel better.

While exercise or dietary changes do help some people with these conditions, they also can make us much worse. We know our bodies best and need to research those changes for ourselves. Weight has never been shown to exacerbate symptoms of FM or CFS/ME, and the physical and mental stress of "getting back to work" is far more likely to make us crash than recover.


You should try this new supplement, vitamin, medication. You'll be cured!

For many people with FM and/or CFS/ME it has taken them years to fine-tune their regimen of supplements and foods. Yes, I am sure many of them would benefit from massage, blood tests, medical care, organic food, acupuncture, and Chinese herbs, but most people can't afford them. As for "cures", there are no such thing. Anyone who tells you they have a cure is either trying to get your money, lying to you, or both! Beware of these people.


You just haven't found the right doctor.

Pain, trouble walking and working accompany this person every single day of their lives, and there is no end in sight. The probability of a cure is not an issue - the necessity of living with illness is the only acceptable option. Your acceptance of their reality impinges on the disabled person's acceptance of life with illness/disability.


Oh I forgot my perfume, fabric softener, smoking makes you sick

Many people with FM and CFS/ME are allergic to, or are sensitive to: fabric softeners, essential oils, perfumes, bleach, any and all pesticides. When you keep "forgetting," they get one of two messages:

1. You don't believe they're really sick.
2. You don't care.


At least you can still (hear, see, etc.). Or, the classic: You should count your blessings.

If you have not experienced the loss, don't assume it's easy to discount. When your whole life has been turned upside down and nothing will ever be the same, it's hard to think you're "blessed". This type of comment does nothing but to inflame the recipient.