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‘But You Look So Good!’ and 7 Other Things NOT to Say to a Person With a Non-Visible Disability
By Robyn Heller Gerbush - Sep 29, 2009
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Also read: what not to say, disability, what to say, peer relationships, DREDF, Disabilities Network of New York City


If you have a friend, relative or coworker with an illness or disability that isn't obvious, you may think you're doing the right thing by saying he or she "looks so good." You can't even tell the person has a disability, and that's a good thing, right? Wrong.


Why do people with disabilities take offense to this comment and others like it? Ninety-six percent of illnesses are invisible to the average person, according to InvisibleIllness.com. To comment on a person's outward appearance dictates, intentionally or otherwise, that they should feel the way they look: just fine.


However, non-visible or chronic illnesses, such as diabetes, mental illness, lupus, multiple sclerosis and fibromyalgia, can be debilitating.


"The term 'invisible disabilities' refers to a person's symptoms such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc., that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury ... and are not always obvious to the onlooker," according to The Invisible Disabilities Advocate. "A person can have an invisible disability whether or not they have a 'visible' impairment or use an assistive device like a wheelchair, walker, [or] cane."


Keeping a good game face is required in corporate America, as it is considered unprofessional to bring personal problems into the workplace. But looking good and feeling good are two very different things--and the impact of a disability or illness is as much psychological as it is physical. From the glares people with non-visible disabilities get after parking in a handicapped spot to the "You're so lucky you get to stay in bed all day" comments, the ignorance of the limitations of life with a chronic illness or disability can hurt as much as the actual pain.


Open Mouth, Remove Foot


"Comments that compare the appearance or ability of a person with a disability to a person without a disability have the same underlying message as saying to a woman, 'Your report was well done, for a girl,'" says Susan Henderson, managing director of the Disability Rights Education and Defense Fund (DREDF). "We understand the impact of that statement on our daughters and our culture--the same is true for comparative comments about disability."


Josie Byzek, managing editor of New Mobility magazine, has multiple sclerosis. Over the course of her disease, she has heard more than that she "looks so good."


"I also get the 'Well, everyone has memory problems as they age,' and 'That happens to everyone,' and lots of other stuff that's supposed to be comforting but is actually awfully minimizing," she says.


Other real-life hurtful comments that should not be uttered to a person with a disability, and why:


  1. "It's probably just stress." This undermines a diagnosis given by a qualified medical professional and makes it seem as though the person with a disability is exaggerating.
  2. "My [insert relative] had that, and she manages just fine." The effects of a disease can and often do manifest themselves differently from one person to the next. Measuring the extent of a person's disability against the condition of another person is insulting.
  3. "No pain, no gain!" This cliché does not apply when it comes to disability.
  4. "It's all in your head." This is especially infuriating for people who struggled to get a diagnosis for their symptoms. Just because symptoms are not visible to others doesn't mean a person doesn't have an illness or disability. Leave the medical interpretations to the experts. This occurs frequently for those with mental illnesses. According to the Mayo Clinic, "To some, the word 'mental' suggests that the illness is not a legitimate medical condition but rather a problem caused by your own choices and actions."
  5. "You're just looking for attention/pity." Hardly. Many people think that those with disabilities are helpless, broken and weak. The stigma is one that newly diagnosed people often have to grapple with in their own minds, which makes it even more hurtful to hear this from other people. But the stigma is wrong.
  6. "You're here! You must finally be better." This fallacy can be maddening. For those with chronic illness, there is no cure, and hearing a comment such as this one proves that the illness is not understood--and that no effort was made to understand it. Becoming accustomed to an illness or disability is a personal journey that everyone makes at his or her own pace.
  7. "I really admire your courage/how you pretend nothing's wrong." People with disabilities learn to adapt their lives around their disability. It is not a show of courage or denial to carry on, and to insinuate such is offensive.

Mobilization


This year, Sept. 14-20 is National Invisible Chronic Illness Awareness Week. Since 2002, the week has been recognized nationally each year to unite and mobilize people with non-visible disabilities and illnesses and their allies to educate government, healthcare companies, and the general public about the 133 million people living with a chronic condition. That number is expected to increase by more than one percent a year to 150 million by 2030, according to a study for The Robert Wood Johnson Foundation, and 42 million of those will be limited in their ability to go to school, to work, or to live independently. Read the full study.


This Means You


If you think this won't be a concern until old age, take note: 75 percent of people with chronic conditions are younger than 65.


One of the biggest obstacles in the disability community is the attitude of the temporarily able-bodied. When Lawrence Carter-Long, director of advocacy for the Disabilities Network of New York City, gives lectures to college students, he asks, "What is the difference between a person with disability and a person without?" After getting the usual answers--having a wheelchair, using a cane or a hearing aid--Carter-Long reveals the real answer: "About five seconds."


"Most of the problems regarding access have more to do with proximity than with malice. If it's not you, it could be your brother coming back from Iraq, it could be your aging parents, it could be your niece being born with a disability," he says.


Carter-Long and other disability-rights advocates urge action by those who think "it's not going to happen to me" so that when disability does affect you, access to basic needs--such as housing, employment, healthcare, assistance--won't be a problem.


Byzek says, "The greatest gift the independent-living and disability-rights movements can give our society is the freedom to just be people. We've created a society that wants people to adjust to systems. This is backwards. SYSTEMS should adjust to PEOPLE. We come along with our limps, our canes, our wheelchairs, our dodgy eyesight, our brilliant minds wrapped in fatigued bodies and say, 'Hey, can you just wiggle this rule?' and are becoming adept at pointing out how this is actually civil rights."


She continues, "We have the right, as citizens, to participate fully in our own society. What would happen if everybody had the ability to wiggle their environment, our systems, to make their lives easier? We'd be a happier, more relaxed society. We'd have fewer stress diseases, we'd live longer, we'd be more productive."

Readers' Comments


More Things NEVER to Say >>

Your opinions and thoughts...
Posted Wednesday Aug 27, 2008 by Guest;

Thank you for this article. It has everyone of the things that are said to me in it and it feels good to know that somewhere out there are people who have an open mind and are willing to help those of us whose voice is never taken seriously.

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Posted Friday Oct 3, 2008 by Guest;

Not what you mentioned but Deaf is another non-visble disability as well!

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Posted Friday Oct 3, 2008 by Guest;

Thank you for writing this article, so that it may serve as a learning tool for those that make assumptions or think they are being 'kind' to the person with disabilities.

As a person with multiple chronic disabilities that are not visible, it is inevitable that I get "judged" negatively because others cannot see my disabilities and make assumptions about my appearance that are false.

This also makes it a very subtle form of discrimination, both in and out of the workplace. I only ask that you be open-minded based upon first-time visual cues. Just because you can't see it doesn't make it non-existent or true.

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Posted Friday Oct 3, 2008 by Guest;

My husband has a spinal cord injury, but outwardly appears mobile and "okay" ... no one can see the chronic pain, the muscle weakness, etc. I can't tell you how much it hurts him when people (quite often my coworkers who see him infrequently) say, "But you look good!"

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Posted Friday Oct 3, 2008 by Guest;

I am often amused to be the "healthy looking one" in many circles, dishing out health and fitness advice, despite 25 brain surgeries to treat hydrocephalus in the last 28 years, plus 26 years of living with HIV. Still, comments like "but you look fabulous" do grate on my nerves.

While grappling with the effects of multiple neurosurgeries as a teen, I lamented the frequent shaving of my head and wanted desperately to be "normal" and play contact sports, even if I didn't really care about them. At 43, I'm happy to keep a very short haircut and show of my topside scars with pride, and I love showing off 1000-pound-plus leg presses, even if there's no compelling purpose for the strength.

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Posted Friday Oct 3, 2008 by Guest;

I have fibromyalgia and if I had a dollar for everytime someone told me especially my mother that nothing was wrong with me I could help balance the budget

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Posted Monday Oct 6, 2008 by Guest;

It should be profoundly disturbing in a fundamental way that most people feel perfectly comfortable making a medical diagnosis based on the idea that someone must be well if they look healthy. Not all phyicians know all the facts about all illness (that is why there are different types). People with no medical education should be able to admit they are a step below that unless they need psychotherapy. It can take dozens of trips to different kinds of doctors to find the truth about anything more complicated than the flu. No doctor could reveal the truth about something like fibromyalgia triggered by workplace chemical exposure if the employer has no toxic exposure notification process. How could a doctor know the truth if the employer keeps secrets like that?

Does profound ignorance mean it doesn't exist?

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Posted Monday Oct 20, 2008 by Guest;

Thank you for this article. I am noting it and adding it to my repertoire for use in helping my friends and family understand my issues.

One thing you miss though is how those of us with one or more of these conditions tell ourselves these same damaging things. I know my own scripts starts out "but it's just pain, it's not like you're actually damaged somewhere". It's hard enough to change these scripts within yourself without having others appearing to validate them, adding to the self-loathing.

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Posted Thursday Apr 16, 2009 by Guest;

The cliche until you have walked in my shoes ..etc-is so true.No one knows the pain levels I have,or the emotinal turmoil caused from my spinal OA,Post traumatric stress syndrome,depression,lmitis on doing ADL's,the waiting for lab results,and the snotty attitudes of the people who are supposed to be serving me.I have paid my dues.I'm a RN whho was in the Army during Vietnam.I don't want special or preferential care,but I do demand common sense and manners.

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Posted Thursday Apr 16, 2009 by Guest;

The cliche until you have walked in my shoes ..etc-is so true.No one knows the pain levels I have,or the emotinal turmoil caused from my spinal OA,Post traumatric stress syndrome,depression,lmitis on doing ADL's,the waiting for lab results,and the snotty attitudes of the people who are supposed to be serving me.I have paid my dues.I'm a RN whho was in the Army during Vietnam.I don't want special or preferential care,but I do demand common sense and manners.

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Posted Thursday Apr 16, 2009 by Guest;

I have Ehlers Danlos and sarcoidosis. I have lost my teaching career, can no longer walk, swim, coach, have endured 17 surgeries with more in the horizon, yet constantly hear about how "good" I look. To this day, I really don't know how to reply. I want them to instead try to hae them understand how brave I am trying to be, how much I have to put up with, but dot ant to upset these people with good intent. I should be happy I look okay, But that constant comment goes up my spine instead!

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Posted Thursday Apr 16, 2009 by Guest;

thank you for writing this ! I have encountered these and have also said some to myself. I am printing it out to help others around me and myself to better understand.

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Posted Thursday Apr 16, 2009 by Guest;

My father, mother and husband all at various times have had illnesses that were long drawn out affairs during which I have heard most of those comments in various forms. I myself have used them before I was aware of the implications. When I hear people say some of those things, I think that they want to connect but don't know how and haven't been through the difficult situation an illness leads one into and lack the vocabulary. Thank you for helping bring the message to more people. It might be helpful for people to suggest alternative "things to say" What would people like to hear? I think I would like to hear "It's wonderful to see you again, I've missed you."

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Posted Thursday Apr 16, 2009 by Guest;

I loved this article. I am a Leader Against Pain trained by the National Fibromyalgia Association and PANDORA,a S. FL advocacy group. I had to think of a sound bite during my training, and it was easy: "My goal is to make an invisible illness visible." I've used it at several city council meetings in S. FL and at state pain conferences that I attended as a patient advocate. May I have permission to use parts of this article in our PANDORA newsletter? I write a humor column and will take a break from "Living With Fibro and Trying to Laugh" with a more serious column about this article.

Kudos to those who write and edit this wonderfully informative e-mail newsletter!

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Posted Thursday Apr 16, 2009 by Guest;

Thank you. My primary HMO said so many of those things.What hurt me the most was a friend of over 40 years giving me cruel unsolicted advice boiled down to pull yourself together. She works as a shrink.Ha. A stone has more compassion. There was so much fury in her e-mail that I deleted it asap. I cried that night.I felt like a fool when told not to cry if I called her.I deleted her too.

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Posted Monday Apr 20, 2009 by Guest;

Thank you for posting this article. I have disabilities that are sometimes invisible, depending on the symptoms I am experiencing. I have heard all of these lines countless times, and sometimes they make me want to scream. These lines deny who I am as a disabled woman, and that denial is like a slap in the face. I simply want acceptance. I do not want pity or some other thing that someone thinks will make me feel good. I am happy with who I am, and, if they can't accept that, they are not worth my time and attention.

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Posted Wednesday Apr 22, 2009 by Guest;

some of my favorites -

you don' t look disabled .......... ........... but you look so healthy.......... ...........your'e doing fine.......... you'll be fine ...........why don't you just get a job?.......... ........... are you sure you dont somehow want to be homeless?......... you can still walk ...... ...........but you dont look like you're in pain.......... ...........when your hungry enough you will...... you have too many medical conditions.... you're to smart to be disabled! .......but, cant you just .... well, your not in a wheelchair.... it doesn't seem like anything is wrong with you ..... what IS wrong with you?

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Posted Sunday May 17, 2009 by Guest;
It is so true about the comment "If you walked in my shoes". I have a disability with my shoulder that I had operated on about a year ago. I had fallen, and broke my shoulder, and I had to have a shoulder replacement surgery.I have complications from the surgery and injury that may never be repairable. People have said hurtful things to me too, but I came to realize that some people are just ignorant, and they don't really understand what I have to put up with, like the constant pain, and the limited range of motion, and restless nights sleep, as nothing will help relieve the constant pain. I've had the constant pain, since the Injury, on April 18, 2008. I had the Surgery on April 29, 2008. I don't even tell my own sister, some of the things that I cannot do because of the limitations of my shoulder. I know if I told her, that she would say that it's not that bad, and I could do it if I wanted to. The truth is that I cannot do some of the things that I used to do, before the surgery. I just try to do the best that I can with what I've got. I keep up with my 18 shoulder exercises everyday too. I feel that the people that would understand my problems with my shoulder, are the ones that have gone through the exact same thing. Other people that have not gone through it,do not and cannot understand about it. This is the same with a lot of other disabilities too. If they haven't gone through it themselves, how can they really even begin to understand how the person with the disability feels,or about all the obstacles that they have to face everyday? .
Posted Tuesday Jun 16, 2009 by Guest;
I had a liver transplant nearly 5 years ago after hepatitis nearly put me away. Before and after my surgery I have been told "but you look so good" by numerous friends and acquaintances. I realize they mean well, but I could scream at times. I don't want to come across as some whiner, but what people don't realize is the pain and frustration that has come with my changed condition.I now have chronic migraines (3-4 days/week) triggered by all the medications I take. I cannot be nearly as active as I was, because exercise makes me extremely tired and will likely trigger a migraine. I take medications for: migraines (which make me tired); anxiety (which make me tired); fatigue when I am worn out from exercise and medications (which can also trigger a migraine); and for sleep depredation (caused by the meds have to I take to prevent organ rejection). At times I feel I need meds just to wake up and go to sleep. To keep myself in balance is a challenge. To ad insult to injury, I frequently have to deal with my insurance company to: make sure prescriptions are "pre-approved" and I have them when I need them (the insurance company could care less about getting meds to me that make life bearable); make sure I am reimburse for medical claims; and track an overwhelming number of claims.Yea, I may look good, but I often don't feel good. Then to tell me it's better than the alternative is just too much. I don't respond to that comment..
Posted Wednesday Jun 17, 2009 by Guest;
I have Hyperacusis, which is an invisible disability. I'm treated rudely when trying to explain to people I cannot tolerate sudden loud sounds, especially when it comes to children. People don't seem to understand it's not that I hate children, it's that I cannot tolerate noise that children will tend to make.Perhaps you can consider this in a future article, it really is amazing how people are so intolerant of something as simple as, loud noise hurts my ears. .
Posted Friday Jul 10, 2009 by Guest;
I am so glad to have read this article. I have systemic mast cell disease and my family has treted me very badly after having been given this diagnosis. I look healthy as a horse but have days that I can barely get out of bed due to bone pain. It is a very hard disease to deal with especially when you don't have support of family. .
Posted Tuesday Aug 4, 2009 by Guest;
In general, I am very weak, it is painful for me to sit down and than get up, I get stiffines of body a lot and getting up each is a lot of work. I get tired very quickly and I walk with a cane. However, I can walk without a cane at times but not for very long. But, I never do around people, because I learned that if walk for a short period of time without my cane aroung people, they stay saying or looking at if I am not disabililty or I am faking it. This is really hurtful. And this mostly comes from my family. So,doing the day, sometime, I go to a mall or a park where no one is likely to know me and I take a short work and then take out my cane when the weakness and pain gets to be difficult. And yes, I am told a lot that I am the picture of health. But, what people are really saying from my hearing, is that I don't think anything is wrong with you. I constantly think if you only new how much medication I am on. Life is lonely being disabled and people think you enjoy not having to go to work. .
Posted Tuesday Aug 18, 2009 by Guest;
Great article! I understand many disabilities are invisible. However, as a person with MS that cannot walk 20' (ever), it's hard to watch a person walk unassisted to their car in Disabled Parking while patiently waiting to park my car. I often wish on their good days they would leave the spaces for those of us that need them, at the moment. On my good days I can drive, on my bad days I cannot even leave home. .
Posted Tuesday Sep 29, 2009 by Guest;
Thank you for this informative article. As someone with invisible disabilities at age 50, it is always mind-numbing to me how well-meaning people can make such poor conversational decisions regarding others and how they may feel or be by just looking at them. Just because you can't see it doesn't mean it's not happening! I urge folks, like this article does, to take the time to think before you speak, and to analyze before you blurt out something both of you will regret in the end. I am a bit disappointed at DiversityInc.com for displaying this article AFTER National Invisible Chronic Illness Awareness Week is over by two weeks. It would have made much more of an impact if it would have been received prior to then so folks could be aware and explore more while this important event was occurring. But, I guess, better late than never..
Posted Monday Dec 7, 2009 by Guest;
To the person above regarding disabled parking; perhaps those people you mention who are walking unassisted to their cars have chronic fatigue, fibromyalgia, or another complaint which means while they may not need assistance to walk (from a cane, wheelchair or another person), they still cannot walk very far without bad symptoms such as severe fatigue or feeling faint. Their disabled badge may be the difference between them being able to go to the shops or not. It's possible that they had to rest before going to the shop to build up the energy, and will have to rest afterwards (possibly for a long time). However, all *you* see is them walking unassisted to their car. No-one knows how much pain anyone else is in, or what other symptoms people are experiencing, so please don't think badly of those people who seem to you to be okay. Try and tell yourself that they have as much reason as you to use a disabled space. Great article, by the way! .
Posted Sunday Jan 24, 2010 by Guest;
How about statements from people in management positions and even medical offices like you can't be hearing impaired you dont sound stupid. The demonstration that usually follows is crude and sickening. I cant explain how shocked I was to have it happen the first 10 times. Each time I explain I have sudde adult onset hearing loss that means I learned to speak first. The yea right is unbelievable. .
Posted Thursday Feb 25, 2010 by joey byrd
I have fibromyalgia and the constant pain, fatigue, dizziness and spasms to name a few that I have every minute of everyday is something I will live with but when applying for disability, I went to my first hearing and the disability judge...yes the judge told me I was too young I was 49 and looked too good, and that I could work in any office in the building we were at. it almost floored me.
Posted Tuesday Mar 9, 2010 by Guest;
Thank you for this article. I have been a (type 1 - insulin dependent) juvenile diabetic for 38 years. I lost all sight in my left eye almost 8 years ago to diabetic retinopathy. I am still adjusting to life without all of my vision and....its been tough. I am disabled due to having chronic diabetes. I have relatives, on my husband's side, that constantly say, thoughtless things, and make rude comments to me. Such as, "If you took better care of yourself.." and "Should you be eating that"? I've been living with this disease most of my life, I Do know what I can and can't eat and when. I'm just fed up. What do you suggest ? .

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