One of the more frustrating things about having an invisible illness like multiple sclerosis is having people tell you, “but you look so good!” It’s incredibly difficult to explain to others what it is like to live with MS, and because so many of the symptoms associated with this condition are not apparent on the outside, it seems impossible for those who do not have MS to understand. We recently posted a story from one of our community members who expressed her frustration about people telling her she “looked good”, and our Facebook community responded in support! Here are some of the comments that our community members shared!

People just don’t understand

• I understand, I have had MS for 11 years and I hear it all the time, “you look good!” Well I don’t feel good! People just don’t understand this disease!
• Don’t waste any more time trying to explain what you’re going through. Most people just don’t get it. If you have a support system, terrific. It takes too much energy to try to educate everyone you know about MS. Don’t be afraid to say NO. I’ve lived with MS for 25 years. In that time, most people I know have “gotten it” through my behavior and actions. Check with your local MS chapter. They have literature to explain MS. Join a good support group. It helps.
• While these words are true most folks mean well its more an issue of them not understanding MS. They understand what they can see, that’s all.
• I get “how are you feeling? You look good!!” almost daily. Some days I wish I looked like I felt so then maybe people would realize “oh, she’s a mother of four and looks like she feels terrible despite her busy/demanding daily routine”. Pep talks are good, and positive reinforcement is also good. Telling me I look good is pointless.
• I always tell the people that I look so good at the outside because there is nothing beautiful left at the inside. It is rotten, so I will do everything to keep my outside pretty.
• I just wish they could be in my body for one day!
• That statement makes me feel like I do not have the right to feel bad, or to “sit out”. It says the person talking has a total lack of understanding of this disease.
• It drives me nuts when I hear that! It diminishes my feelings. No, I don’t want to roll around in “whoa is me,” but heck, this is real.

People think I’m lazy

• My family thinks I’m lazy and expects me to push through it. I’ve been a plumber for 25 years and a timber faller logging for 7 years… I could get disability, but I want to work, I just can’t over do it.

People mean well

• I think many people mean well by saying it. The truth is, I don’t venture out when I don’t feel well. I had a cop question me using my handicapped permit earlier in the week – checking my ID against it and he said “these aren’t for convenience”. I told him that he should be thankful I felt like crap or I would tell him what I was really thinking.

I don’t feel like I look good

• MS made me gain weight, changed my shoulder and my legs, and my eyes cross. My body hasn’t felt fit in years, so please don’t say that I look good
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I don’t mind if people tell me I look good

• I don’t have a problem with people saying I look good. All I can say is thank you.
• I still like to hear, “you look good,” even if it’s not true.
• I rarely talk to anyone about how I feel because they “know exactly how I feel because they do too”. Even though they don’t have MS.

What about you? How does it make you feel when someone says, “but you look so good”?