Things People with Invisible Illness DON'T Want to Hear
Certain phrases really annoy a lot of us with chronic illnesses such as fibromyalgia (FMS) and chronic fatigue syndrome (CFS or 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 chalk board.
Here are 5 things to avoid saying to someone with FMS, ME/CFS, or other invisible illnesses:
- "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 likely that 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.) (Plus, depression is a very real physical illness, so the phrase "just depressed" is inappropriate anyway.)
- "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 change 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 FMS or ME/CFS, and the physical and mental stress of "getting back to work" is far more likely to make us crash than recover.
Are you left feeling like you don't know how to approach your friend or loved one's illness? Don't worry! Appearing here soon - Things People with Invisible Illness DO Want to Hear!
Get a better understanding of what it's like to live with an invisible illness, or find understanding and support if you're sick, by visiting About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.
Suggested Reading:
- National Invisible Chronic Illness Awareness Week
- A Simple Explanation of Fibromyalgia
- Understanding Chronic Fatigue Syndrome
I hear number four the most often. It usually comes from friends and family who are just trying really hard to understand what I’m going through, trying to find a way to commiserate with me. I appreciate the love behind the comment … but the most helpful comments are from people who actually have CFS.
Right on!!! If one was to say any of these it would automatically make me feel defensive…as if having to justify how crummy I feel in detail and why their suggestions just will not work. I don’t even mention fibro or any of the other invisible illnesses, unless someone else brings it up in a subject or unless they suffer also. I agree with Linda…the most helpful and consoling is done by one who suffers too.
We always want to look better than we feel and then people think you must be o.k. They don’t realize we can do a good job of covering up. It would not be good to just look like we feel, no one would want to be around us. The remark about them being tired, they don’t have a clue what ‘tired’ really feels like!
I have heard most of these comments myself but the one that makes me upset is someone close to me told me I was lazy. That hurt me because I have worked all my adult life and been independent. I wish people would educate themselves before opening their mouths!!!!
I am so tired all the time too! I hurt where I never thought I could before, I take naps but a nap isn’t for 3-4 hours long.
Mona is so right on, people just don’t understand. I am not just tired I am bone weary tired. I wake up from my nap and I could go right back to bed
The thing which annoys me the most is when people assume we have some kind of choice about how we feel. I have a friend who once made some comment about how i try to avoid any kind of activity or exercise… as if I’m choosing not to do these things. People really don’t understand… there needs to be way more information available about CFS.
Those of us who take prescription medication for the disrupted sleep that is common in fibromyalgia often hear “you should treat the underlying condition instead of taking sleep meds.” Wouldn’t it be great if there were an effective, established treatment for our “underlying condition”?
Guide Response: I find that statement especially ironic, since our sleep problems may actually be part of the underlying condition! People just don’t get it, do they?