Skip to content

From Those Living with Chronic Conditions

“I sit here with tears in my eyes, because I finally found a website that says what I have been trying to say for years!! Now I think I can continue on without the feelings of hopelessness and worthlessness. You have literally saved my life!” ….. Tammy, Ohio

“I found your website the other day, and I honestly think it was heaven sent. The most difficult part of my illness has been the lack of understanding from friends and relatives, and your articles are absolutely brilliant!!!!!” ….. Shani, Georgia

“I just wanted to say THANK YOU!  I had no idea that there were so many people ‘just like me!’ Thank You for your website and for making invisible diseases visible!!” ….. Lynn 

“IDA has been a great encouragement to me. IDA was the first place I could find understanding and help from people who I could see really understood invisible pain and suffering. IDA brought reason and understanding to many people who simply thought it was all in my head. After many tests and years of going to the doctor they now see that my spinal cord is damaged and that I do have a neuromuscular disease. I still look good and my attitude matches my looks. IDA has been my bridge of hope to all those who simply didn’t understand that someone can suffer intense pain 24/7 and look so good. Thank you IDA for being such a huge help in reaching all those people in my life who simply didn’t understand.” ….. Stan, Pennsylvania 

“God Bless you. It is so difficult for those of us who have chronic pain. People just look at me and say, ‘You’re on disability? You look great!!’ I bite my lip and as your article states, it makes me feel as though they think I’m a liar or faking it. Thank you for this site. It’s a blessing for us who have to live in pain.” ….. Nancy, Florida 

“I love your site and reading the pamphlets on “But you look good” really was an amazing experience for me. It was the first time it felt like someone really understood how I was feeling…Great job!” ….. Jill, Dizzy Lounge. “This is a terrific website that explains what it is like to live with an invisible disability. It is excellent material to share with family and friends to help emphasize our feelings and needs. This website deserves an award for its compassion & empathy in dealing with this sensitive subject. Thank you for spelling things out clearly for so many of us.” ….. Cindi, Tennessee 

“This really is a terrific resource for those of us living with invisible or ‘hidden’ disabilities. Congratulations to all involved. Sites like this are what the web is truly about.” ….. Julie, Jooly’s Joint

“I joined [the IDA Social Network] soon after I had to quit work and it saved my life. To this day (over 2 years later) I still maintain friendships that span the country (no, the world) and I continue to host their chatroom 2 nights/week. It is a website that values your feelings and your privacy.” ….. Jane, Colorado

“Having RSD has been a nightmare for me but I feel it has been harder on my family.  I was one of those Moms that worked full-time but did everything with my kids and still found time to fall in love everyday with my husband.  I now consider a good day to be when I get out of bed and spend any amount of time with my family.  I miss ME!  I miss my relationships with my kids and especially with my husband.  I always need help with everything, where as before, I was the helper. I wanted to thank you for being out there for us.” Anonymous, California 

“This is the most comprehensive and well written material I have come across on this subject…You have provided an incredibly important service…I sent the address for your page to all of my close friends and family and told them that this might help them have a better understanding of what I am going through. I hope they take the time to read it. I have read a great deal on chronic illness in the past few years, and again, this stuff stands out head and shoulders above the rest.”  ….. Erin, Washington 

“I really enjoyed the articles on the web; my husband picked up my copy, read it and I noticed a difference right away.” ….. Sharon, Canada 

“Your website is very educational and clearly explains to people the need for handicapped parking and the challenges faced by disabled people. I hope that you are able to maintain your website and that many more people visit and learn about people that are different from themselves. Maybe one day they will need disabled parking and they will be thankful that it is available” …. Lindsay, Maryland 

“This is truly a remarkable website. Very inspirational…it gave me great comfort yesterday when I was feeling down. God bless.” ….. ‘Lil Jeanie, Maryland 

“Thank You / Thank You / Thank You! This site is FABULOUS – I Love It. So once again – THANK YOU!”….. Vickie, Texas 

“I love your web site! It says all the things we want to say to our friends and loved ones who don’t understand our disability…Congratulations on expressing ‘our feelings’ so well!” ….. Judy, NC 

“Thank you for creating this site. It is exactly what I need. My family and friends don’t know what to do with something that can’t be “fixed.” …I hope I can give a couple of your pamphlets to my family to read. Perhaps if it comes from a source other than me, they might take it to heart! Many sincere thanks, Vicki.” ….. Vicki, California 

“I very much appreciate the work that you are doing…I have diabetes and have had it for 46 yrs as well as Diabetic Neuropathy for the past 10-11 yrs. It is hard when you park in a handicap space to combat the stares and glares because you aren’t wheelchair bound. People need to realize that there are other conditions that cause mobility problems.” sopatient ….. Ricki, Texas 

“You deserve the “Its About Time Award!” so many things I have read in the last five minutes were things I thought but would never ever be able to say out loud. There are so many people out there who are suffering in pain and do not know that you exist… thanks!”….. Christy, Nevada 

“What a tremendous and beautiful web site!!!!!!!!! Incredible insights!!!!!! The author of this web site said that she had not been able to fulfill her aspirations and dreams. Perhaps God had a more important mission for her– and she has found it!” ….. Reid, Utah 

“Your page served to help me very well at my job. Due to an unsympathetic boss, I was not being heard or understood due to my invisible illness. I have Chronic Hepatitis C in advanced stages. My bosses could see nothing, so I was being expected to perform at work as always. Praise the Lord, I am home on 6 mos. full time disability pay for some much needed Infergen treatment.” ….. Bob, Georgia 

“I think your message is GREAT! I have been both a caregiver for my wife and now a patient with MS. I know both the frustrations of trying to help and not knowing what to do and needing the understanding. You state everything very well and with a lot of compassion.” ….. Randy 

“…When I read [IDA’s website] I thought ‘Wow! This is how I feel!’ Then I got and email from a friend that I shared it with and she also said ‘I was crying thinking, Wow! this is me!’ It’s truly amazing and wonderful that you have been able to put “our” feelings into words that we can share with others, hopefully helping them to understand the things that we are going through. I truly appreciate your work, and that you have made it available to us.”… Brenda, Arizona 

“My wife and I think this is a very insightful website. I have an ‘invisible disability’ and am not able to work. We have seen many friends and family ‘back off’ from our relationships as we are not able to participate as we once were. The attitudes of others can be very depressing and disheartening. Thank you very much for this site. There is an advocate out there for us.” ….. Rick, Ohio 

“How wonderful. You described to a T what it’s like to be a chronic pain sufferer that still looks good on the outside. Thank you for that.” ….. Judy, Michigan 

“I have recently been diagnosed with pulmonary fibrosis. People look at me really funny when I use a scooter to get around places. Apparently they don’t understand that people who can WALK can also have a disability that prevents them from being able to walk for any distance. In my case, I can’t BREATHE. I am a nurse who is no longer able to work due to the need for constant O2 and the inability to ambulate and breathe. I wish more people understood.” ….. Lynda, Georgia 

From Their Loved Ones

“My 32 year old daughter has suffered with chronic back pain from adhesions for 7 years now. She has two children, ages 8 and 3. She had to quit teaching last year because the pain had gotten too bad for her to continue. Now her husband is divorcing her, taking away her medical insurance and also trying to take away her children because he doesn’t believe that she is in pain (he thinks she can voluntarily “take control of her pain!”). I know how difficult it is to accept an invisible disability in a loved one because I was in denial for a long time myself. I tried to be supportive, but at times, I found it hard to believe. Finally I found acceptance by reading the book, “But You Look Good” and since that time it has turned my life around and I give her my unconditional love and understanding and do whatever I can to help her and the children.” ….. Sue, Alabama

“I just finished reading your book “But you look good” and would like to tell you that this has been the most accurate book I have read about chronic pain. My wife has RSD that has progressed for the past 2 years, in May 2001 she tore a tendon and damaged her cartilage in her right wrist. I think my wife probably ordered this book, but I read it before her and can relate to the examples in the book. Again thank you for the encouraging words that help me feel that I have been helping as best as I can…” Ramon, California 

“My husband has always been in chronic back pain and this information has helped me see him in a different LIGHT. Thank you for you very helpful website.” ….. Frances, Washington 

“I just read your booklet, But You LOOK Good! and learned SO much!!! I have SO much to learn when it comes to understanding and encouraging my husband’s pain (both physically and mentally). I intend to read your booklet a dozen more times.” ….. Ashley, Connecticut. 

“My husband has chronic fatigue syndrome and deals with pain daily. He is a very strong looking man and has been ‘terrorized’ by family calling him lazy and anti social. To this day his greatest pain is the accusations that he receives from his family about his condition. I am very please to find this web page and I intend to send it to his family. Thanks and God bless.” ….. Anne, SC 

“Wow. I am overwhelmed with the direct hit to my actions/reactions to my sister’s debilitating illness. I have committed every classic no-no of one who is in denial. Thankfully, after reading and absorbing your work, I can gain the compassion and empathy I need to help her, instead of merely giving advice to make her snap out of it. Hopefully, I can also help my family to understand how important it is to support her. My brain is swimming with ideas of how to help her. Thank you.” …. Doree, Florida 

“I have a husband who has Lyme Disease and it has changed his whole life. Friends and family members still can’t believe he is disabled and can’t work. They just really don’t believe he is ill. I live with him and I see how he hurts and how tired he gets. He became disabled and does good just getting himself up everyday which is a job for him. I know if he were well he would not give up all the things he enjoyed out of life. Your story really made me stop and think and I will always look back and read it again.” ….. Cathy, Kansas 

“I’d like to say that this is a very good site, it has helped me to deal with my fiancé’s diabetes. He is a type 2 diabetic… He looks fine, and it is hard for people to understand that he is in constant pain from the diabetic neuropathy in his feet. Thank you so much for this site, and a prayer for all those out there suffering from chronic pain.” ….. Teresa, Oregon 

“Your pamphlet on what to say/not say and how to say it is an excellent dose of reality for those of us who do not have any chronic illness. I have worked with AIDS groups for several years and now find devastating illness closer to home in the persons of dear friends and family. I’ve always striven to show compassion, but denial has such power that it sometimes asserts itself. Thanks for a potent message.” ….. Jay, Ohio 

“I commend the writer. She has helped me understand some of the problems of the medically disabled. The biggest misunderstanding is, ‘but she looks so good, she can’t be ill.’ Keep up the great work!” ….. Ron, Illinois 

“Your whole web page is great… this site reminds me of how I might be able to help and respond to the people in my life who have invisible disabilities. Keep up the great work and creativity!” ….. Randy, Colorado