From Our Readers
“I am the President of the American Behcet’s Disease Association. I have read your booklet and it is great. We plan to have them available at our Walk for a Cure, and also the medical conference. Thank you for all you do.” ….. Cathy Fornabaio, President of the American Behcet’s Disease Association (ABDA).
“The members were thrilled with the booklets! We had the group break into separate areas – tn’ers & support persons, and had lively discussions for several hours. The families and friends attending went over the booklets and discussed how they related dealing with their loved ones. They found so many good ideas and tips, it was truly an enlightening meeting for them!”….. Ruth, Pacific NW TNA Support Group Facilitator.
“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 [my daughter] my unconditional love and understanding and do whatever I can to help her and the children.” ….. Sue, Alabama
“IDA was the first place I could find understanding and help from people who I could see really understood invisible pain and suffering. Through the years I’ve been able to better explain to people what it’s like to live with an ID because of the book “But you look good”. What a great book. The book helped my wife better understand people who struggle with ID’s everyday. Many of the chapters in the book were like reading my own life story. It’s difficult to get people to see an ID when you look like the poster child for good health. IDA brought reason and understanding to many people who simply thought it was all in my head.” ….. Stan, Pennsylvania
“I was looking for help on my many problems and found the site. I have FMS, CFIDS, visual defects, recovering from a stroke & heart disease. These are the main things and are quite overwhelming. I heard “But you look so good” way too often and ordered the book. It has helped me tremendously and I am going to order more. I have lost all but 2 people in my life because of my illnesses.” ….. Mary, Florida
“I can’t express how that book changed my life! My Mother didn’t understand Fibro at all and she came to me & apologized she now understands by reading your book it was the most awesome thing I have ever experienced in my life w/my Mother! She said everyone should read this book and understand what Fibro is & we who have it need to get the word out to others that don’t understand! My husband also read the book and he said it helped him so much to understand me and what I go thru on daily basis!! Thanks so much!” ….. Judy, Oklahoma
“Terrific insights and communicated clearly…my husband said it finally opened his eyes to what I had been trying to say all these years. Thanks.” ….. Sue, New Jersey
“Hi, I love this site and am ordering the booklets!!!!!!!!! I have faced such an obstacle in getting friends and family to understand my situation with ulcerative colitis. I just attended my first support group meeting and am going to share this booklet as a resource with others and my family. This booklet addresses my thoughts and feelings to a T!!! I am so glad someone has taken the time and put this together!! Thank you.” ….. Samantha, West Virginia
“My husband read [the booklet] straight away and I actually got a cup of tea in bed this morning, what a treat!” ….. Kris, Australia
“My girlfriend, Lisa, bought your book for her friend Tammy who has been very ill. You should know, it literally saved her life…and I mean literally. Lisa was driving north to visit her family. She got a phone call from her friend Tammy. Never one to drive and chat on cell phones, Lisa had to stop for 20 minutes on the side of the road to convince Tammy not to commit suicide. She finally did talk her out of it, thank goodness. A couple of days later, Lisa gave Tammy your book and she read it cover to cover in about 8 minutes, gave it to her husband and he read it, and now he understands her issues. Amazing!”… Tom, Anonymous
“This is the best book I have ever read in regard to invisible disabilities…I have had such a hard time explaining what I go through and how I feel. I cried and cried reading the book because it described me to a tee. I think you are a wonderful person for putting all of this in writing and making it understandable. Thank you so much.” ….. Debbie, Virginia.
“I received a copy of your message ‘But You Look Good!’ and was so happy that someone had put into words what I have been trying to find a way to say to people…so many people question how can I feel so badly when I look so good that your article really lifted my spirits. Now I feel I have a way to give them something that can perhaps share what the other side of this coin is like.” ….. Lois, Michigan
“I encouraged my mom to order your book, But You LOOK Good. She said it’s helped her to better understand that [just] because I look ok on the outside, doesn’t mean I feel ok on the inside. I am grateful for your site and your book, I don’t think my mom would have ever understood without it. She’s passed it along throughout the family and everyone who has read it so far has had a better understanding of what just daily life does to me. Thank you so much for writing this book, and sharing it with us, it truly has been a godsend to me.” ….. Kelli, Illinois.
“Your booklet says it all on what to say to people with invisible disabilities such as a back problem. Thank you so much. It was inspiring & great to read” ….. Pat, NY
“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
“You really have the gift for putting what all of us feel into words. I wish I could get everyone I know to read what you’ve written. Keep up the good work!” ….. Peggy, Georgia
“I got an un-usual call today from family member. Trust me, its un-usual because they don’t call. They shared a lot of things with me. Just like the quotes you offered in your book. They didn’t even para-phrase. I was gleaming that you gave this person words to say, and these words were like a healing blanket on my wounded heart. Thank you from the bottom of my heart.” ….. Anonymous
“I just finished reading your booklet and feel like bawling in relief that you have identified and eloquently described what is helpful and what is not for people with chronic illness. You put into words what I have felt for 20 years! Now I can pass this information on to my family and friends and others who suffer.” ….. Sandy, Colorado
“You have said what I have wanted to say to so many people for so many years. I have suffered with Crohn’s disease for 35 years. I have never been able to find anyone who could really understand what it’s like to suffer with an illness that can affect every aspect of my life all the while, looking (for the most part) normal on the outside. Not that I have been searching for pity, just some understanding. My thanks goes out to you!”….. Matt, Washington
“I always wished I could find a booklet like this! The information on your site is great and since it’s so hard to explain MS or other invisible disabilities to others, I am grateful to you for writing your booklet and making it available.” ….. Brenda, Indiana
“I just finished reading the Helpful Hints booklet [But You LOOK Good] and although I found myself filling up with tears on almost each and every page, I enjoyed it immensely.” ….. Bonnie, Rhode Island
“My Dad used to hassle me every single time that I saw him. It had gotten to the point that I rarely ever went to my Parents home anymore, and when I did it would be for no more than 10 minutes at a time and the times were rare. I gave my Mom and Dad each a copy of your booklet. I know that my Dad read the whole thing. He has been transformed, literally. He never says a word to me about my back injury anymore. He used to always say thing like ‘You better hurry up and get back to work, or your going to lose your job.’ Plus he was always really hostile to me over nothing. What an utter Blessing your booklet has been to me in my life. You put on paper ‘exactly’ the words that people who have never had a ‘Chronic Illness’ NEED to read. Thank you so very much for being responsible for getting some of the people in my life to clearly understand just what all I have to go through just to manage to do the simplest of my daily needs, not to mention all of the things that I do that lay me up for days at a time.” ….. Jerry, California