But You LOOK Good!
But You LOOK Good!

Categories: Community Life, Health

Photograph of Mike and Angela Pierce

By Guest Bloggers Wayne Connell, Founder and President of the Invisible Disabilities Association (IDA), and “Antarctic” Mike Pierce, IDA Ambassador

Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.

Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story.

 “Angela and I have been married for almost 21 years. To most people, she is a very ‘normal’ looking young lady. Of course, I think she’s much prettier than average (ha ha). She drives a car, reads, has friends, is not missing any limbs, is not in a wheelchair and seems able to perform the functions of daily living, like most of us. If you were in a conversation with her or sitting next to her, you’d probably see her like any other woman her age.

Because she looks normal, you’d expect her to be normal in many ways. You’d likely think she was a working professional; probably a mom; someone who enjoys traveling, sports and other activities in which most people participate.

However, looks can be deceiving. You see, the truth is that Angela survived a 125 foot freefall in a rock climbing accident, breaking her bones in 168 places and requiring more than 40 surgeries. She has hepatitis C from a blood transfusion, a pituitary mass in her brain, Post Traumatic Stress Syndrome (PTSD), kidney failure, has been on dialysis and the organ transplant list and takes more medication than most households do. On the outside, Angela looks just fine.

On the inside, she’s challenged beyond description. The difficulty is that her disabilities are completely invisible, unless you see her compound fracture scars and the skin graph on her legs.

One thing I’ve learned during our 21 years together is that she has different needs and communicates about what those needs are in a very different way than I would have ever expected. During the early years of our marriage, we would fight loudly more often than I’d care to remember or admit. She would get very upset at me over things that I had not done and things I did not understand. I took those comments personally and took my shots back at her, fueling the fire further. I’ve thrown telephones, cereal boxes and other things across the room in anger. One night in a parking lot outside a bowling alley in Denver, a police officer overheard our arguing and came up to ask us if we were okay. We calmed down quickly after that.

What both of us learned after many of these arguments is that what Angela was initially upset about was not the real issue. It was something else that was related to the difficulty of living with various invisible disabilities. It was not me, anything I said or did, but what she was going through. We did not realize that we needed to grow in our ability to speak and understand a different language. I’m talking about the language of invisible disabilities.

It’s not an easy language to understand, as you have to think, be very patient, not take comments personally, listen more and not try to answer questions and solve problems immediately. Often, people with disabilities or chronic pain just want to talk in order to express themselves and let out the pressure that builds up inside them. Questions they ask, comments they make and issues that seem to bother them are not necessarily the genesis of the problem. That’s okay. I’ve learned to just let Angela get it out without me interrupting her, fixing her or commenting. This takes tremendous patience and self confidence on my part, as the knee jerk reaction is to take things too personally, wondering what I did or said wrong.”

The expedition will be long and tough, yet rewarding, as Mike has shared. The language will sometimes be somewhat familiar and other times very different. The best teachers of this language of invisible disabilities are those like Angela and my wife, Sherri, who live daily in the land of illness and pain. Learning the language is the first step to becoming expedition ready. Join the expedition!

Antarctic Mike (Mike Pierce) is a professional speaker, executive recruiter, avid adventure athlete, world recorder holder and a husband to Angela, who lives daily with disability due to a rock climbing accident. Mike also serves as an ambassador for the Invisible Disabilities Association. Mike has completed marathons in some of the world’s coldest climates, including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging and important marathon, that of helping Angela manage her lifetime disability.

Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities.

83 Responses to But You LOOK Good!

  1. Mona says:

    Sometimes they don’t believe you’re in pain “because you don’t act like it.” My brother has chronic back pain and I’ve seen how it changed his actions, attitude, personality, even his laughs (he doesn’t giggle anymore). The fact that you stayed positive in spite of the pain amazed me. Keep up the good fight.

  2. source says:

    Wanted to drop a remark and let you know your Rss feed isn’t working today. I tried adding it to my Yahoo reader account, but got absolutely nothing.

  3. Natasha says:

    Thank you for sharing your story. I’m sorry you are in pain, it’s very very difficult. Try to stay positive and move forward. Peace and blessings, Natasha

  4. Ramona says:

    I am a 50 year old professional counselor who has cervical myelosis and bi-polar disorder. I’ve been able to function but have had surgeries and currently am unemployed, in constant pain as well as rollercoaster depression/mania mainly because I can’t get health treatment needed due to no health insurance or job. I want to work. I want to help others like myself, but I must heal first. I am awaiting a reply regarding my current disabilities from the government and that could take up to several months more. This is really unacceptable to me and I know there are many others like myself. You would be a welcome advocate to all people who others deem O.K., but truly are not. We all deserve quality of life!

  5. Connie says:

    You hit it right on the button. I have chronic back pain, it has been a nightmare. Recently I was in the hospital. According to my primary doctor, the reason I am in so much pain is because of the pain meds. Of course it’s NOT because I have had 9 back surgerys from a QUACK DOCTOR. Back to the subject, his exact remark to me, “You don’t look like you are in pain,” honestly I didn’t know PAIN HAS AN ACQUIRED LOOK. Needless to say, I was livid. By the time I left there I was worse off than before. I have been in chronic pain 20 yrs. I try very hard to present myself as if I’m not in pain, reason being I don’t want my children or grandchildren to worry. I worked very hard to try to hide my pain. Anyhow, his remark is written in my hospital report along with other negative feedback regardings the meds I take. I left the hospital feeling like I am a drug addict. Believe me when I say, I will be the 1st in line if they come up with something that will help me besides meds. His remarks has made it very difficult for me to get a pain doctor. As Donald Trump says, I looked at him and said, “YOU’RE FIRED!”

  6. Karen says:

    I agree that many times when the comment is made, it’s not meant to be malicious or judgmental. Even us who know well about invisible illnesses (i.e., the illness or injury not obvious to outsiders), and who have loved ones of their own with them can be guilty of stating the “But you look so good….” type comments to others. I know someone who has been through so much with a many-year chronic health condition…and she DOES look good–even great…but nevertheless life is a struggle for her daily. I had prior thought it a compliment to tell her she looks good. My comment/timing will never again be the same. I will ask how she is doing today. And I will tell her specifically that she looks really good…her outfit is beautiful….or something specific like that that has no ties to how she feels or should feel because of the way she looks. I thank you so much for the “insider perspective” that will help all readers be more sensitive to others! I so appreciated your article. I’ve passed along the link to others in my workforce with possible need to know given their respective roles!

  7. Tillie F. says:

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  8. Jacob I. says:

    Superb! Typically I never read whole articles, though the way this is written is basically remarkable and really kept my interest and I appreciated that.

  9. Hipolito M. W. says:

    As soon as I saw this post I shared it on my Facebook and a few other social media sites. Thank you!

  10. Sherri says:

    I also suffer from an invisible disability, ADHD, Generalized Anxiety Disorder & due to all the stress from my employer it has caused me to have a cardiomyopathy, weak heart muscle. I have been employed at this company for 25 years & never had any issues with any other bosses until about 5 years ago. I actally was never diagnosed, until about 3 years ago. I did however kinda know I might have it since both of my sisters have it. They are younger than me by 12 & a half sister 25 years younger. They both take medication that works for them. I have tried many types of medication, but to no avail. Since my heart episode I cannot take stimulant medication, which most are. So I am trying to deal with this with not much help. My main issues are short term memory loss & time management. They go hand in hand because I forget to do the things that are necessary to get dressed & out of the house. This has caused me to be late for work & have a hard time staying on task. I am told I take too long doing parts of my job. I am a custodian at this company & have always been complemented on my detail to cleaning. Since I got this new boss about 5 years ago, she does not understand why I cannot do my cleaning faster. So she has harassed, intimidated & made me feel bad about myself, a lot of mean & inappropiate comments to me over the last 3 or 4 years. This has only made my condition worse. My family tries to understand but I know at times they do not, same with my husband but more frequent. I have since been fired & I really have a hard time. It is a little better because I do not have to deal with my boss, but our financial issues are much worse. It takes so long for disability retirement & SSI. I have one friend that understands me, because her daughter also has ADHD. If she forgets to give her daughter her medication, well you get the idea. As a general rule there are not many people who understand this disability, they think I don’t care or do things on purpose. I would not wish this on anybody, my old boss included. It is very frustrating for me, & if I try to go faster it ends up taking longer. But I look so good! Thanks for letting me vent, you do have to be in pain all the time for that phrase to be used.

  11. Steven L. M. says:

    How goes it? Great blog.

  12. Dan says:

    Great post.

  13. Sybil V. says:

    You’re so cool! I don’t think I’ve read anything like this before. So nice to find somebody with some original thoughts on this subject. Really thank you for starting this up. This website is something that is needed on the web, someone with a little originality. Thank you for bringing something new to the internet!

  14. Burton H. says:

    I must agree with you here, and I thank you for allowing me to post!

  15. Ellen Z. says:

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  16. Anissa D. says:

    Awesome read, thanks for sharing.

  17. Nick F. says:

    I was diagnosed with stage 4 terminal esophageal cancer, yet after 4 months of radiation and chemo, and having my esophagus removed 3 months after that, even I’ll admit I look pretty good. The problem is I can’t sleep through the night, my digestive system is a mess, and fatigue is swift, unpredictable, and can be overwhelming. Yet, I can’t tell you the amount of people that have asked me why I’m not working and give me the fish eye when I try to explain, or when I tell them my condition is terminal, and they assure me I must be wrong. Because I look so good! I probably did the same thing before I understood how horrific the whole experience can be. It would take hours to explain all that’s involved in my continued treatment, but you look good is right up there with “I know what your going through” for things I don’t want to hear. If someone actually did know what I was going through, they would never say that. Sorry for the long drawn out comment, but I needed to vent. The proper comments (in my mind) should be “I’m sorry to hear that,” and “I can’t imagine what you’re going through.” Because even if you had the exact diagnosis and treatment as me, you still could never know what I’m going through.

  18. Elijah I. says:

    I really like your writing style, fantastic information, thank you for putting this up. : D.

  19. Cora B. says:

    Regards for this post, I am glad I noticed this website on Yahoo.

  20. Marilou G. says:

    I’d have to check with you here. Which is not something I usually do! I enjoy reading a post that will make people think. Also, thanks for allowing me to comment!

  21. Judy says:

    This article hits the sore spot of my psyche and travails. Two years ago, I lived through a nasty, capricious, and rare disease called Viral Encephalitis. After spending 5 weeks in hospitals, I came home to the welcoming faces of family and friends. As the article points out, people have the best intentions when they say, “But you look so good,” however, this “compliment” is loaded with land mines. Behind it are some unspoken and spoken feelings such as “why aren’t you back at work,” or, “get on with your life and stop whining” (ok, I admit at times I whine). Even health care providers often tell me how lucky I am to have survived and how good I look, the first statement being so true.

    I’ve learned to say thank you and be gracious about these compliments. Only my husband really understands what I’ve gone through and the pain I experience on a daily basis. Thank God I have him! He understands the daily pain I have as a result of my disease.

  22. Mary J. says:

    I find it hard to hear “BUT YOU LOOK GOOD”….Makes me feel like either they do not believe me or that they just really do not care about my injury and the resulting suffering…and 99% of the time they ASKED ME about my health! My belief is that we all need to share…it is not contagious and it is not negative energy that will attract to them…it is life. Afterall, right, we all suffer…we all have seasons to laugh, to cry…sharing is important to reach out, to educate others, but also it may help someone up the pit that is down farther than you….

  23. Kasondra says:

    I’m 26, and live in pain every single day. It’s only been 4 years now but that seems like a lifetime, and when I think about how my illnesses will never go away…forget about it!

    My husband and I got married in June 2009 and by July 2009 I was going back and forth to the doctors trying to figure out why I woke up one morning with pain in every single joint. I went from an active mother and wife that would easily walk 6+ miles a day, two or three times a week, to struggling to make a quick grocery shopping trip. I have Psoriatic Arthritis, Fibromyalgia, Sjogren’s syndrome, several herniated discs, degenerative disc disease, Enometriosis and I’m sure others that I’m forgetting.

    I’m still struggling to redefine my and my husband’s relationship because the truth is that I am NOT the same person I was when we married and unfortunately never will be. It something that I struggle to come to terms with and it does affect my behavior and emotions. Because I am in constant pain I am also constantly irritated. Add on to that a 4 1/2 yr old boy and my life is….interesting.

    I hate being asked how I feel…the answer is always crappy, lol, but I’m doing OK…I’m still alive!

  24. Fefer says:

    Wow! You hit this right on the head! I don’t know what life is like without pain! 12 yrs ago at the age of 39 my life turned upside down. Diagnosed with severe osteoarthritis of my cervical spine. Had surgery to fuse 4 vertabrae & made it 10 times worse. The Dr. screwed up putting the screws into my spinal cord. I woke up paralyzed! 3 surgeries that same day. Well now I can walk but have CONSTANT nerve pain all over from the spinal cord injury! As if that isn’t enough, I was misdiagnosed by over 20 Drs. with a rare condition called RSD. The symptoms & medical bills are endless. I rarely get out & when I do the only thing people say is “how are you?” I’m so sick of this… I’m losing hope. There is not 1 Dr. that knows enough about RSD, nor has the time to listen. Osteoathritis is in 6 diff. joints. They would rather call you a “head case” & push you out the door. Financially & my personal issues with my family has put me at rock bottom & I can’t seem to dig my way out. Where & what does a person do when you have no money & live on SSDI?

    • Trace says:

      I have the same kind of problem and am having a hard time of it physically (as always), emotionally, and financially. It’s very discouraging some days. I just wanted you to know that I “get it” and feel like you do with advanced osteoarthritis and advanced joint disease at 50 years old! I used to have a full life…now my world is SO SMALL. I know, sitting on my on my pity pot doesn’t help; but writing it all down to you who feel the same does help a lot! Thanks for letting me complain…

      • Trace says:

        AND people ALWAYS say to me, BUT YOU LOOK SO GOOD! Wicked annoying; although I should take it as a compliment…..I think…..

  25. Andrew says:

    I read your content. You have done a great job.

  26. Ginger C. says:

    Hi, I can completely understand the topic, though I think the example given is not the best – someone who was injured in a rock climbing accident is basically responsible for his/her state. In the comments I read much more fitting stories and I can understand them much better.

    • Wayne Connell says:

      Ginger,

      Angela and Mike’s story is a real story of love, acceptance and understanding. The cause of someone’s illness or injury should not be judged. People do not raise their hands and ask for a chronic illness or for unbearable pain or for some sort of injury. Things happen in life which no one asked for.

      Part of learning the language of invisible disabilities is understanding what a person is dealing with now. We have a tendancy to blame people for their illnesses or injuries. We tend to compare one person’s difficulties vs another. We somehow feel better if we find a cause for their troubles, especially if somehow they are to blame.

      Maybe people shouldn’t climb rocks or drive cars or eat fried chicken or smoke cigars or ski or walk too fast or clean with bleach or eat cotton candy or ride elevators or, or, or. There are things in this life where we can take precautions and maybe live our lives healthier. As I mentioned above, nobody asked for diabetes or a stroke or fibromyalgia.

      Let’s all take the time and truly love people in their suffering. Lend them a hand, give them a kind word, not allow them to be left alone and isolated. Believe them, love them, care for them. We are all in this human race together and we need each other.

    • Lolly says:

      Ginger, sorry but that is a rediculous thing to say. Let’s focus on the invisible injury experience. Every one of us could say if we had not been exposed to this or that or if only….

    • Karen says:

      With all due respect to you, I find your comment judgmental, and we as humans are terrible judges. If one slips on the floor someplace and becomes injured, is it one’s fault because one went to that place? Wore the wrong shoes? Wasn’t paying attention that the floor was wet? Pain and suffering are pain and suffering, regardless of how inflicted….and whether physical (i.e., including mental) or emotional.

  27. Joe D. says:

    Thank you for your insightful blog.

  28. Cindy M. says:

    My name is Cindy, I am 58 yrs old going on 100. I know exactly what you mean when you say you look good. I even have one doctor who says I do myself an injustice by having a wheelchair. I am on my third wheelchair in 20 years. I have arthritis from my toes to my nose and every place in between. Hips, knees, back, jaw, and legs are the worse. I have fibromyalgia, too. It takes me a good two hours to be able to move enough to get dressed in the morning. I have a care giver to help me with this. I can no longer hold a pen or pencil, or even a glass of tea. The pain is constant. I have a hard time eating because my jaw is falling apart. Yes I have a whole crew of doctors trying to fix me. I had an angiogram for my heart last Monday. The doc said I had a heart attack. I don’t know when. Neither do they, but I did. 20% and 30% blocked, nothing to do about it right now. Then I get home and I am trying to pass kidney stones. Will it ever stop?? I know it will. I know I am lucky to be alive. The bad part is that my brain keeps going just like it always did. It won’t slow down. That bothers me the most. I never want to leave the house. Sometimes I cannot stand to stay in my home. I want to talk to other people but I am unable to face people face to face. To top everything off I am bi polar. I am not able to tell people what is wrong with me. They never understand. Mention bipolar and they are a flash of light. The frustration is so bad that I am either crying or angry. People tell me I need anger management. But it is a reflex to keep from crying. I have had most of this all my life. I am so tired of all of this. I do wish for a normal day. But if I had just one day normal then, I would want one more, then another, and another. I am very glad I have found your site. You have given me something I have not had in a long while and that is …HOPE! Thank you.

  29. Danna G. says:

    Can I just say what a relief to find someone who actually knows what they are talking about on the internet. You definitely know how to bring an issue to light and make it important. More people need to read this and understand this side of the story. I can’t believe you’re not more popular because you definitely have the gift.

  30. Mark says:

    I am a 100%+ Disabled Veteran who is sick and tired of hearing that phrase “BUT YOU LOOK SO GOOD!” I look that way because my wife works herself ragged to keep me that way, plus I refuse to look anyway but as good as I possibly can. I just wish I could trade places with the people who say that aforementioned statement for 30 days so they could find out what it is to live with both mental and physical pain every second of their life and to realize there is no escape from their situation!

  31. Mark H. says:

    I am a 100%+ DAV and I get so sick and tired of hearing that phrase “BUT YOU LOOK SO GOOD!” I just wish I could trade places with those people for about 30 days so they could feel the pain, both mentally and physically that I have to deal with everyday. Maybe then they would keep their stupid mouth shut instead of commenting on something the they don’t have the foggiest idea what being Disabled actually is!

  32. Joan says:

    Lots of helpful information. I have bookmarked your site.

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  34. Long Feather says:

    Thank you for an amazing post. I will take a look at your others posts. I appreciate your ideas. Thanks again! You make a good point. I believe if more people thought of it like this, they’d have a much better time getting the hang of the situation.

  35. Jimmy/DiedinNam says:

    Everyday is hell!! Just like a war zone. 100% DAV.

  36. Cathy P. says:

    I am sorry to hear about your pain. I too live with daily pain due to multiple spinal surgeries and work in the medical field and I found this article very insightful. Pain is a very subjective symptom and even with my colleagues, I find that there is not a lot of empathy for a patient in pain. So many nurses I work with do not understand how their words can affect a patients response and many of them do not feel that “pain” can be an urgent need for getting an appointment to see your doctor. Once you have chronic pain or pain lasting for over 3 months, then it is even harder to get in to see your doctor even within the same week if you feel that you have a need.

    Ironically, I now work with a pain management doctor. As his nurse, there are many patients that do not even want to speak to the receptionists to make an appointment, as they feel like they are not taken seriously. I think that my own personal experience with pain has helped me as a nurse.

    My son labelled me as “handicapable”. At first I was offended by this and discussed this with him. His response was that some days I can do a specific task and others I cannot. There are no truer words said than that, other than yours, that there can be “invisible disabilities”!

    Thank you,
    Cathy P.

    • VK. says:

      Thank you for your write up. I was divorced from my wife after many years, because she said she fell out of love for me. I believe she was afraid she would have to be my constant caregiver. I have tried to move on and find a new relationship, but have had bad experiences with it. It was either the disability or the income. I even got taken advantage of and used by some, for their attempts of financial gains. I have had some ‘friends’ and family members who think because “I look good” and seem to be able to do many things, that I’m alright. They do not understand that I have good days and bad days, different from theirs. I have problems that keep me from having a job. I had to learn to live within the means of SSD, which sometimes limits what I could have as luxuries. I am lucky to have other friends and family members who understand my disabilities and support me – they try and help me through the tough times and are more patient with me during those times. I was fortunate enough to have my daughter-in-law help get me set up with an organization who have worked with me to help retrain the injured parts of my brain, they have been very patient and good to me. There are parts they cannot change, but for the most part I am able to live as normal a life as I can. I live alone, but have been blessed to have many good times with family and friends.

  37. Sherril A. says:

    I have been reading many of your stories and it’s pretty nice stuff. I will bookmark your website.

  38. Kathleen80 says:

    I just said “You look good” to a friend last Saturday. However, she wasn’t talking about her health…and I know her hidden disability.
    I love the idea of this blog and I understand it completely. I’ve had rheumatoid arthritis since I was 35 and I will be 80 in May. I’ve learned not to talk about my illness with anyone but my RA doctor, family and close personal friends…and only when they ask.

  39. Mary M. says:

    I know that I am preaching to the choir…I have cerebral palsy (that’s not very visible, until I am extremely tired, or eating, or under anesthesia and my heart can stop!). I also have fibromyalgia to couple the problem, along with several other abc’s (diverticulitis, arthritis, gerd, etc). Living with constant chronic pain and issues and doctors just scratch their heads; either they don’t believe that I have what I have (“How does your cerebral palsy manifest itself?”), or comments on how “fine” I look. The other wonderful eraser statement is, “But you look so normal!” and my other favorite one is, “What an inspiration you are to me…” Now all these statements seem fine on first blush, but are really hard to swallow. Why? My husband walking down the street with his Canadian crutches is work, not an inspirational act. Looking normal, while I guess a nice thing to say (they mean it as a compliment), but what they fail to see is that it erases the work I go through to live daily with classism, oppression, and even failure to be served coffee in a restaurant. It erases the pain that is not being addressed, oftentimes medical need because people assume that if you look fine and sound fine, you ARE fine, and fail to take the 2nd or 3rd review of medical records that are really required (a good example of this was a surgeon who almost rejected me for emergency surgery on my gallbladder, because I didn’t act like someone with an infected gallbladder!). I was lucky to have several ER nurses and doctors at that hospital who had seen me many times, to relate to him the serious nature of my condition…Thank god, because once open, the surgeon said it was the ‘junkiest gallbladder he’d ever seen, and I could have died.’ This is why these statements are not so good for us (not to mention ADA issues that we get dismissed out of hand because we are not chaired, crutched, or visible to their idea of need).

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  40. Miss Vita M.K. says:

    I am a 49 year old divorced afro. American woman. I was married to VETS. We lived overseas. I have RA, and maybe MS, and a back operation at this time in my life while looking for a new husband again. I am going to get married again and I will be walking down the walk way (smile)- I still walk. I feel very good about myself, even with painful days and nights sometimes. You have to keep on loving you. And dating is something else at this age, it’s not 1990 something (smile) – its 2012! – Miss Vita M. K.

  41. Jeramy says:

    You’re so cool! I do not think I have read through a single thing like that before. So great to discover another person with genuine thoughts on this issue. Seriously…many thanks for starting this up. This site is one thing that is needed on the internet, someone with a bit of originality!

  42. Susie says:

    I love you guys. I bought a few of your guides a few years ago. I wish I had found you earlier in my disease diagnosis. I too have MS and am told all the time “You look so good!” I choose not to complain about how I feel, who wants to listen to that? Apparently I’ve done such a good job even family members look at me and ask why I am not working. I work hard at doing the best I can every day…some days are better than others, but in the end every day is a challenge I’d rather not complain about. I share your guide with others with MS and friends and family. Thank you for all you do.

  43. Pamala C. says:

    I have chronic nerve pain caused by a stroke I had 23 years ago. I’m 54 now and it has been a very lonely and pain filled road. I was recently diagnosed with degenerative bone disease and it’s the most painful in my hips. But because it is an invisible disability, my family have all turned their backs on me and I am completely alone, they don’t believe I’m always in this much pain. I cannot work, go shopping with them because of the pain and my limitations, and I have no money to spend, I cannot ride for long periods of time, and they just don’t like being around me, like I’m just in the way, that hurts my heart beyond words. I could never ever treat anyone in this manner, I don’t have the heart. I’m on disability and it is very hard to get by. Most mornings, it’s difficult not to cry out just trying to sit up in bed. I have a very good doctor, but pain meds can only help so much. I rescued a kitten who was being beaten, so she’s my baby and my only companion. I would do anything humanly possible to make her life a happy one. She is why I keep trying. I too have been told “but you look good.” I wish people would educate themselves if they are going to be around someone with an invisible disability. Self esteem is low enough as it is.

  44. Michele M. says:

    My daughter had been struggling with headaches, nausea and dizziness for over 2.5 years before she was FINALLY diagnosed with POTS in September 2011. She was 14 when this started and is now 16. She is being home schooled and is missing out on everything a “normal” teen does. Prior to the diagnosis she “looked normal” on the outside but would get severe headaches, dizzy spells (that would last up to 6 hours) and horrible nausea. She would have a ‘good day’ hear and there and then be bad for several at a time. We had several docs tell us that she was making it up and that if she didn’t go to school that they would turn us in and send us to jail and put her in juvenille detention! Since those horrible comments have been made, she has had adenoid and sphenoid sinus surgery (the sphenoids had been infected for over 1 year) and no one caught it. She has since been diagnosed with POTS and insulin resistance –but according to them she was “making it up!” Needless to say we do not see either of those docs. The school has been horrible and some people in general just don’t understand or care b/c “she looks normal”. As a parent it is so hard to see your child struggle and even little things like driving by her high school and seeing banners up with the athletes faces on them, brings me to tears because she could have been on them. I see her friends facebook pages posting pics of them during activities or afterschool, etc. and I tear up. She is missing out on so much, but even so she fortunately has been a trooper and has maintained a positive attitude. Keep your chins up and do not people judge or assume things. We are all in this together and I wish you all the best!

  45. Richard says:

    Tears came over me as reading. Please walk in my body for one day and I will not look so good. It is so difficult and people who do not know, I really think don’t have a clue. With food and gas and housing costs, I have still not gotten any help with housing. I am very limited to what I can do each month. It could never happen to me, you think, and it did. Now I have three children and I can’t afford to visit them. They do not take good care of people with disabilities in NYC an NYS.

  46. Daphne says:

    I have a rare incurable untreatable genetic autoimmune disease (C.A.D.A.S.I.L.) that causes erratic, unpredictable Tonic/Clonic seizures (Grand Mal). I have a Masters Degree and had attained tenure as a teacher – a career I loved. At the time I began seizing, I had no idea that I had an illness and was devestated when I could no longer work or drive due to these irretractable seizures. I hadn’t begun having seizures until age 31; apparently I had multiple white matter lesions on my brain that had been silently damaging my brain over my lifetime. I am disabled today and no longer able to work. I hear this all the time, “you look good.” My God Father said, “you could at least be working part-time”. I was very upset by his comment because I can’t control my seizures to only occur on the weekends or outside of my work schedule. If I could, I would still be teaching. Also, the extraordinary fatigue, migraines and other issues because of needing daily anti-seizure medication is daunting. I am 5’7″ 127 pounds, blonde with a kind heart and big smile. On the surface, I do look healthy. And, it is a great challenge to hear the comment, “you look good” because it does feel accusatory, seeing me as lazy or undeserving. Most have no idea how I began working as a young girl in high school, worked full-time while earning my degrees, and have always been a responsible and productive citizen. Now, I take things day by day. But, I do wish people were more compassionate to us, who have “invisible disabilities”. Thank you for bringing this subject to light.

  47. Tammy says:

    It is sad to me that telling someone “but you look good” has become such incriminating evidence of a lack of empathy. To say something – anything – positive, especially to someone who we know has been experiencing difficulties related to health and the associated areas of their lives, is one of the nurturing aspects of human nature. In most cases, I believe it is not meant as a dismissal of the serious nature of a person’s pain and experience, but merely an attempt to boost the morale of someone who may be having a hard time finding ways to feel encouraged. To the recipient it may feel dismissive or unsympathetic, but the intent is just the opposite. I’m glad the author included suggestions for other approaches, but not everyone will read this article. Maybe we could try not to read between the lines and just take it at surface level…”you look good” is not an insult.

    • Wayne Connell says:

      Tammy – I agree that someone who is living with illness and pain needs encouragement and compliments. The comment “But you LOOK Good” usually follows an explanation from the person living with the illness on how they are struggling each day just to survive. It seems to them that the person was not listening and just wants to say something “positive.” Yet, someone sharing about their illness is not being negative, they are only sharing the truth.

      By learning the language of invisible disabilities, a person might instead of saying “But you LOOK Good,” give a genuine compliment such as “wow, I know how much you struggle each day, I want you to know today the way you styled your hair is really pretty” or “your smile is amazing since I know how tough it is each day for you.” By changing your language just a little, you will be letting your friend or loved one know that you care and you are moved by their perseverance.

    • Mike says:

      Tammy,

      Thank you for reading the blog and commenting. The phrase “but you look good” is not intended to be an insult. I don’t think anyone who says this to someone with an invisible disability is intending to insult anyone. I think rather its purpose is to highlight the ignorance that is so prevalent in our society as to how to communicate and understand the world that people with invisible disabilities live in. That’s it. It is not anyone’s fault and nobody here is being labeled as good or bad. Unless you live with someone or are close to someone who looks “normal” but is not, it is easy to understand why an outsider would be confused by someone who looks like everyone else but can not function like everyone else. The purpose of this blog and ones related to it is to help teach people about this very fact. Thank you for taking time to comment and I hope that helps.

    • Sherri says:

      I totally hear you, Tammy! I don’t think anyone living with any sort of illness, injury or disability would be offended by a compliment. In fact, I don’t get out much, but when I do, I want to look my best just like anyone else. Thus, if someone tells me, “You look great today,” I’m elated! :)

      However, the comment, “But you LOOK Good” in the context of this article is not used as a compliment. This is a response phrase used after a person shares about their debilitating condition to express, “I can’t believe you have an illness/ disability, because to me, you LOOK fine (no illness, pain or disability).”

      I have kindly asked many people over the years what they mean by this comment. They have had no trouble telling me that they couldn’t believe what I was saying about my illness, losses and limitations were true, because I didn’t “LOOK sick” or “LOOK disabled.” It is when people don’t believe what we are saying, that the reply can be hurtful.

      I used to sing and dance in musicals, act in commercials and cheer-lead. I worked multiple jobs, put myself through college, rode my horse and lifted weights. Losing my career and being unable to care for my daily needs has been a horrible struggle 24×7.

      I keep fighting to find purpose to go on; nevertheless, people not believing what I have been through, lost and am going through every day, just because they can’t “SEE” it, knocks me down to the ground with a broken heart that is so hard to overcome. Sadly, I am not alone.

  48. Darlene W. says:

    This was a great article and I wish everyone could understand what its like living with an invisible disability. I for one do. I have SLE {lupus}, and people can’t figure why I don’t work, but anymore I just say I retired and don’t tell them I am on SSI. The pain on a daily scale is up and down, good and bad. It’s hard to walk that mile unless you are in my shoes…and I would love to be back in the workforce and be with people every day, but what if when I get up the next day and can’t make it?

  49. Bernice H. says:

    I’m so glad that I came across this article today. I have a congenital disorder called Chiari Type 1 malformation, which I had surgery on Jan 11, 2012. I can relate to your wife and the fact that my doctor keeps saying “but you look good.” Of course my response is, “I want to feel good again.” It’s been 2 months since my surgery and I continue to have chronic pain, fatigue and a host of other invisible symptoms that everyone thinks Im making up in my head it seems, because to them I look perfectly healthy on the outside. I’m so frustrated because my body won’t do what it’s supposed to and I feel like I’m just left to try and figure out how to manage this all alone.

  50. Maria I. says:

    Also I may look good on the outside, but my insides are killing me. My doctor doesn’t want to give me pain meds because you can get addicted to them. I tried everything for pain, but nothing helps. At one time I did get pain meds and it did help, then they stopped so I suffer now. I’m always in tears because of it. I need lots of prayers and hope for a miracle.

  51. Maria I. says:

    I have a herniated baulding disc, very painful, it also makes my right leg hurt. I use a cane. I’m very weak in that leg, in servere back pain and also I am diabetic and have fibromyelja all through out my body. I have my good and bad days, mostly bad. I do have depression and take meds for that. I just don’t have a life. I’m so limited in what I can do. I have been to doctors appointments over and over. I just feel people understand some of what you’re going through, but not enough. Help please. Could you give me some advice?

    • Disability.Blog Team says:

      Hi Maria,

      You may want to check out the IDA website at http://www.invisibledisabilities.org for some of the resources and advice offererd there. The website includes personal stories, information, news and updates about living with an invisible disability, chronic pain and illness. The Help People Understand section (http://www.invisibledisabilities.org/encourage/helpunderstand) offers tips on how to help others understand what you are going through.

      • Phyllis says:

        Hello Maria, I have just ran across your comment on Disability.Blog. I thought I was reading something that I had just written. WOW! TRUST ME. I UNDERSTAND EXACTLY HOW YOU FEEL. No, people will never understand what you’re going through until they go through it themselves! Believe me, it took me years of therapy, and the words of someone who I trust with (my life)- my doctor – to make me understand. How can someone else understand if they’re not going thru it “themselves”? Think about it. It’ll give you something to do. Try to have a GOOD DAY!

  52. Jennie W. says:

    As a caregiver to my daughter who has MS, this is a comment that we hear daily, even get strange looks when parking in a handicap spot. Sometimes I give a return comment, sometimes I just shake my head at the person who made the comments. In the future, I will just invite those who made such comments to Lakeshore Rehab for a first hand view of visible and invisible handicaps sufferers and to forums so they can understand the unseen side of illness.

  53. Steve L. says:

    This is so right on the money. I suffer from many spine injuries. It took me 4 years of hell to get on disability. From staying with family members for two years to living in a homeless shelter the last two. It took taking it to a hearing to get on disability. As I told the judge, I know I look like nothing is wrong with me. I’ve striven hard to cover up the pain I’ve had to deal with for many years. I have heard people that want to do nothing but talk about their pain and that bothered me for some reason and I’ve striven hard to not be like that. So many times I have had to grit my teeth to carry on and tried to not be a burden to others, to try to keep and hold down a job, only to be laid off many a time because there were days that I hurt so bad that I wasn’t able to get out of bed, making up reasons why I could not make it in that day. Having to deal with the comments from co-workers and family members for so many years and it would cut you deep that they didn’t understand what you were going through in trying to deal with the pain. Doctors who even said that they see the problems in my spine and would just put a band-aid on it and tell you to carry on. I self medicated with drinking, as 4 or 5 hours of no pain was worth it. Then back to dealing with the pain for the rest of time other than the restless sleep and back again trying to make it through another work day. Then after 4 bouts with celluitis that have left my legs in unbearable pain and the pics of what they look like, swelling so bad that it felt like they were about to split open, is what finally go me on disability. Dealing with the damage of trying to keep working for so many years with no help for it has left me to where I am mostly bedridden now as the pain of standing or sitting is too painful. I talk about my pain now more but it still makes me uncomfortable doing so. I feel like I’m supposed to grin and bare it, people ask how your doing, I say fine when I could scream from the pain. I have seen several people that would put me down because they didn’t understand what I’m going through and then they get hurt and realize and understand what you’ve had to deal with for so many years.

  54. Virginia H. says:

    Thank you. Just reading this made me cry. How often co-workers, bosses, and loved ones haven’t believed or understood. Now I can no longer work but still hear the “But you look good” comment and even angrier if they learn I am on social security disability.

    Please send me more information on IDA.

  55. Bernice M. says:

    I have BiPolar Disorder with Psychotic features, PTSD, Panic and Anxiety disorders. I also have to deal with a chronic pain disorder and hypertension. I take a lot of medication, but hold a full-time job at a state agency. Many know I am a mental health consumer, but can make the most inane remarks. “You sure do look good for a consumer”. “How can you work at a MH agency and you have an SMI?” “I could not be who and what you are, because people look at you differently when they know you are a consumer of MH services.” I am grateful that I am in recovery and not dependent on a system that is broken in so many ways. No, some people could not handle my invisible disabilities; they are not strong enough. They also cannot handle my ABILITIES because they are looking for imperfections. I am quite content in the place I am.

  56. Virginia G. says:

    I also hear the comment, “But You look good.” I had a car accident three years ago and I am also suffering from pain daily since. Thank you. It seems someone understands. I love and appreciate you. God Bless You and your family.

  57. Faith says:

    Thanks for writing this article. I have a different type of “invisible disability”; but I think both you and your wife are awesome individuals to be able to deal with what curtails her disability. Please, keep writing articles like this. These articles are an inspiration to those of us with invisible disabilities.

  58. Rose says:

    I understand. My daughter, my son, and I have invisible disabilities.

  59. J. Moates says:

    I have prayed for a group just like this, that understands that I am “labeled” Disabled, but must be working the system, because I don’t look or act like it.

    If I had written the same booklet, it would have been titled, “Years of Tears.” Even the people closest to understanding the concept, or also suffering with others in the Invisible Disabilities Asso., sometimes don’t know how to communicate in either direction.

    I’m a fan!

  60. Carol T. says:

    I have experienced this many times over the years. The worst is when so-called “healthcare providers” look at me and sarcastically ask, “What are YOU on disability for?” It’s the old, “Gee, you don’t LOOK disabled” syndrome.

    • Michelle C. says:

      This one hurts the most. I have only recently started hearing this. Can’t they read the chart and see what I have? Maybe the intent is to shame.

  61. League of Legends says:

    I do consider all of the ideas you have offered in your post. They are very convincing and will definitely work. Nonetheless, the posts are very short for novices. Can you please make them a little longer next time? Thanks for the post.

  62. Catherine D. says:

    My family struggles to understand me, and often blame my medications on my moods, reactions, my pain, etc. It would be nice to be able to have them read something that maybe they could understand, besides blaming my pain meds all the time.

  63. Jeff V. says:

    Invisible disabilities are tough realities that warrant our understanding and support. Thank you Wayne and Mike for gearing us up for the expedition!

    • Mike says:

      Thank you Jeff for your comment. The real heroes on the expedition are Sherri, Angela and those who live everyday with the invisible disabilities. I’m just one person who brought Angela’s story to light.

  64. Frankie says:

    I have back pain that I live with every day. I have had 5 back surgeries and am still in pain. I have heard people say, “you can’t hurt that bad.” Believe me, you can. I would love to have copy of this book for me and my family to read. I am disabled and there are feelings that I sometimes can’t explain.