links and comments
Navigating the Body

Your comments, past and future, are greatly appreciated. It's the only way we know you're out there.

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last updated 18 October 1999


[OCTOBER 1999]

I enjoyed this website immensely. It touched my soul and every fiber of my pain. Now I know there are others who feel our pain while most look at us with question. Thank you for your art.

I just finished going thru your web site. Everyone with a family member or friend needs to see this. I was diagnosed with FMS over 2 years ago. I was like Karen ,[Fibro what?.I developed sever pain in my neck, shoulders, and arms.My daughter is a P.T.A. she massaged me, I took pain meds, went to bed. I saw the Dr. the next day , I was lucky I guess He was very up to date on Fms.He said I had probably had it for 10 years or longer. I had suffered a lot of problems thru the year but as usual the Dr.s always said there wasn't anything wrong with me. All in my head they would give me tranquilizers and tell me to come back in 6 months. Thank you so much for doing this. God Bless all of you Donimo, Karen, Rose for sharing this part of your life, I understand. Must stop now, in much pain right now. Pain meds not helping. LOVE TO ALL

Iam new to computers but not new to pain these visuals are so true that I sat and cried I try so hard to tell people but they do not under stand. Some don't care others just don't get it, I have now given this visual web site . you are so right on I can't even tell you . I felt so much for each of these women and I haven't even gone though all they have . But plenty, more than i want and thier not though yet.

Your visuals caused the dam in my heart to burst freeing the tears of the memories of all my yesterdays.
And now I know I am not alone.

I have also suffered from this illness that no one sees or hears what it does to me. I was like Rose. As a child there was always something wrong with me. Starting with the asthma. If there is any way that this could somehow find its way to the media such as 20/20 or dateline it would do the rest of us such a service in raising the awareness of these terrible thing that invades our bodies. I was so moved by you presentation. I want to thank you.

Wish I had words to express my feelings after viewing your site. Thank you so much for taking the time to do this for us. I sent the site name to my family members, hoping to open their eyes a little more into my world.
- C.

I'm very impressed by your site! My daughter has Myalgisch Encephalomyelites - in short: ME. The frustration and disbelieve is a mental pain that is added to such an illness by OTHERS.
I 'm telling about and sending your Website to as many people I know. I hope the understanding will grow and help to cope with any illness you 'can't see'.
Thanks for your effort to bring this so touched on Website! All the best to all of you who need it so much!
Lots of love, Ll.

tres belles !
--Caroline, France

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One of the best sites i have ever seen. I cannot understand the feeling of those women at all - and that's what is great about your web, that i understood this fact...

Terrifiing and beautiful. Thank you. Good luck
--Tomas, Slovakia

le site est trs bien malgré qu'il soit en anglais (:o(((
--Lynette, France

Hello, I thought your site was very interesting. I don't know if FM is like R.S.D.(Reflex Sympathetic Dystrophy). But they say the Pain is invisable. I was diganosed with R.S.D in 1996,due to an on the job injury. The Pain I have is never ending, the med's I have just barely take the edge off, but not enough to go outside and beyond the computer.(My world is the computer) My life is not my life anymore, Pain is my life. Expermential Drugs, Physicial Thearphy, Nerve Blocks, etc... My 12 yr.old son keeps telling me "mom your only 31, please come outside with me" But what he doesn't understand is I really want to, but too scared to try, afraid of the Pain, or falling. Also that I have no sweat glands left in my left leg due to this, so if I go outside and I begin to sweat I will sweat more faster somewhere else.

I've tried to committ sucide twice now, but someone from R.S.D Hope program has stepped in and talked me out of it. I would NEVER wish this on anyone, not even on the job I lost because of it or the life i used to have. I'm now a 31 yr old female, with a 12 yr. old son that is living again with my parents. I watch my parents go off to work everyday while I stay home and try to deal with awful way to live..

Sorry, I know I keep going on, but sometimes it helps it vent it. I've tried doing that to the Quack's that try to "treat" it, but they're as lost at it as I am, If not even more..

Thanks For Listening!!
--The LabRat

I too, have this disease that takes of your life and returns nothing. I too, have considered an end of this world. My saving grace is a husband who tries very hard to understand why the wife he loves and married 16 years ago, awoke one morning 11 years ago in pain. My other saving graces are the 2 daughters that God has gifted me with. The pain that they go through because they don't know if mom will be well enough to go to this or that adds to the strain and disatisfaction with my lot in life. The fact that I am no longer able to drive since my cognitive skills are badly affected, (they took my license after I drove under a parked truck. Praise God that I didn't hurt anyone, since I knew that I was becomming too impaired to drive.) makes it embarrassing for them because the other parents always have to drive. Changing our financial structure because I am no longer able to work, of course means that they have less than I want them to. The three of them treat me like an eggshell, a very loved eggshell, but still something that is so uncertain.

I was diagnosed 10 months ago. I can't tell you how many doctors, blood tests, MRI's, and any other tests that they could stick to me or in me I have gone through. The financial amount is awesome. I'm thankful, for the most part, for insurance. The loss of dignity as you are told that it is all in your head. That every test is normal. That perhaps your relations with your husband are bad. All this to find out that there is nothing that I can do about it to begin with. My personal favorite indignity came by the doctor who diagnosed me, "When do you want me to make another appointment?" I asked. "Oh, you don't have to." I was told, "I don't want to treat you anymore because I can't cure this." What a God complex.
--Jennie, USA

I don't think that I've ever encountered anything more captivating on the internet. The images, animations, cartoons, quotations - everything woven together conveying the experiences of pain, denial, desperation of these brave women. I sat behind the monitor and my body and my mind felt a glimpse of the pain they've to put up to every day. I didn't hear the phone nor the door bell and forgot to disconnect for half an hour.

Still recovering and swearing by myself to lead a life as aware as possible.
--Reinhard from Hannover, Germany

Thank you for a beautiful site. Since getting this computer in July I have spent many hours searching for anything on FM. I've had this wicked disease for 16 years. I feel like a prisoner in my own body. Gone is my zest for life! I can sympathize with the women involved in your site. Keep up the good work and maybe some day we will be able to get people to understand how ill we really are. Again, Thank You.

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[AUGUST 1999]

I just came across your site. It is beautiful. I have never seen a similar depiction of this disease. I was recently diagnosed with Fibromyalgia, and after viewing your site, though it is beautiful and I think you are all very strong women, it was a little depressing. I work about 50 hours a week. I'm not very athletic, but I do walk and I'm able to carry on a normal life, although I often have severe muscle pain and it's difficult to sleep at night. It seems to be gettting worse and worse as days go by and I'm worried that I'll end up in a wheelchair, unable to work, or worse, confined to bed. Do you know if people with FM just keep sinking into complete hell?!

your creation is a very powerful experience. It speaks to me.
--Jean, Canada

Never before have I gotten this type of feeling from the internet.

I was diagnosed with Fibromyalgia five years ago. Lucky for me it only took eight months for a diagnosis, but only after I lost the use of my hands, and my job, and my art. I have turned my back on the Western medical establishment, not because they can't help, it is because even when they don't know, they still pretend that they do, using big words and thinking that we can't see through this.

I do not tell people that I have FM. I do not wish to place myself into this "catch all" category. Sometimes I can forget and think my life is normal. But then I remember the pain that doesn't leave and this empty body that is so full, pushing against invisible boundries. So much of the time I sit alone in this world. How can anyone else comprehend this pain that I express with such a calm face.

This site reminded me that there are others who feel this pain. I send love to all. We are explorers of these bodies, whether we like it or not. Keep learning. Growing.

Hello, I was touched by the way of discribing this illness. What courage is needed to live with this.... I send my hope and strenghts to this three women. The chosen art is great. I was very impressed by the way of showing us this personal and very private issue of this great women. The comment and all the beautifull 'pictures' did really impress me. Thanks for telling us; perhaps more people will be considerable to people with an illness which can not be seen on the outside... I will.
Kindley regards,
--Astrid, Holland

The art of life is living. Beautiful site and art!
--Willem from Holland, Occupational therapsist (just working with a client for finding solutions together for making life again fine)

Hellow Susan and the other dear women, I'm from the Netherlands, my name is Els Coppens van de Rijt, I am nearly 56 yours old (18 august), very happy merried, mother from 4 childs, painter and writer and I have a desaese, a cronical illniss with the diagnose 'Ehlers-Danlos-syndrome': my skelet, my connective and muscular tissues are too weak, I am a 'snakewoman' (the dictionairy sais 'contortionist'), so I'm very instabil, that is why I have to use a wheelchair. My organs are weak and don't have enough motility, therefor my daily food goes into my body with a pump, I cannot eat much, only a little cake and a cup of thea, no dinners, no other food. Because of my incompetent organs I am incontinent from my urine and faeces, that is why I'm waiting for a big operation, the doctors will give me three stomas: one for loosing the urine, one for loosing the faeces and one for the input of the liquid food..

This 'first' illnes, this ED-syndrome is the cause of the 'secundair fibromyalgiesyndrome'. Therefor I understand your sites very, very well. I am impressed, touched, I can't find the right (good) words for what I'm feeling after reading your sites. It is regrettable, it hearts me to read what you have to sustain. I know your pain, your fatigue, your disapointment, your suffering, your totaly illness. The medici don't believe you, why ar they so incompetent? It is not you who are mad, they are mad! You are creative women with a lot of suffering, pain, tiredness et cetera! I know what it means whenn you will get up and you cannot because of the pain, the tiredness, your totaly feeling ill. You all have a serious disease and you need help, notion, interest and first of all: RESPECT. I wish you all THE BEST!!!

My english is not so good, but I hope you understand what I want to tell you: YOU ARE FANTASTIC WOMEN. THANK YOU FOR YOUR CONFIDENCE!!!
lovely greatings from me, ELS - the Netherlands

I am very impress by your web installion. I can feel the pain through the narritive images. I am in Taiwan.

Hello! I just finished watching your site and needed to drop you a note. Its so profound. Interesting and deep. I dont have any words to say what I feel right now. Its a great site, the graphics, the lay out and, most of all, the content. I can almost see throught the eyes of each one of them after watching and reading each page. I wonder if doing all this great job has been a little more gratifying with their pain, their problems, I'm shure of it, I hope.

I'm From Mexico City and studying Chemistry at the National Autonomous University of México. I have 23 years old and working in the school with multimedia, web pages and design related to chemistry. If I can be of any help, please email me.

Have you tried music? Some great people think music can, if not cure it all, take it away for a while...
Sincerely yours --Ros

My daughter and I have just discovered your incredible site. We are extremely impressed by the strength of the pieces and the brilliant way you use the internet medium. We hope that getting the inside outside has helped you deal with this horrible disease which we didn't even know about until discovering it in a way that has us almost touching the dilemma ourselves...
--Roberta and Laurence from Paris, France

I'm an artist and graphic/information designer who has been involved in web development for four years now. Sometimes lately the drag of production and making a living gets me down. I heard about your site and got lost in it for the last hour. I just had to tell you... what you have done here has reinspired me, made me go deep in thought about why I am here, and what the web means to me. Thank you.

And to the women, and all other people with this disease... I can understand now, like never before, what this disease means, and my heart cries at your pain, and rejoices at the strength inside each of you.

I just had to write to tell you how beautiful I found your web site. I had never heard of FM before, but the impact of this unusual disease is illustrated so meaningfully by the collages and narratives of these three women.
--Lisa, Canada

My mother has been suffering since December of 1998 and it was so therapeutic to see the installation, even though I am not the one with the pain. I have cried a lot and can't believe how insensitive so many doctors can be. Thank you for the courage of the women, and thank you to the artist who saw that they are still people. There must be a way to help all of them.

The most impressive multimedia work i have seen for months on the net. During the visit, i almost forgot that i was on the net ! I was in the story. Nothing to do with the usual cyborg-minded rethoric. Art that makes sense that makes us more human. An asymptotic approach to perfection which definitely shows us in which direction to orientate our search of "something new", in this so-called post-modern "fin de siècle". Hope my prose does not sound too french.

Best Regards from Paris, France

I got your URL from mention in A List Apart, and I just had to write you a note to add to the many who say,

"WOW!! This is what the web should be."

To me, as an artist, what's impressive is the fact that many, many other web pages have a similar look, but the HTML, scripts, and images you have blended together make arresting, thought- provoking art. This is no small accomplishment.

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[JULY 1999]

I just read your page on the three women with FM. I don't have FM, but I do have conditions myself that are not easily diagnosed and I'm still not sure if they're properly diagnosed. I have what I think is Renaud's Syndrome - my mother has it and I have it...fingers going white, cold, no circulation. I've always had irregular periods, painful cramps, heavy periods, then after being on pill and going off after divorce and chosen celibacy, I stopped menstrating for two years, then had heavy month-long period. I was never told what was happening, just told it was not healthy and put on pills again.

After I researched myself, I feel it was Amennorhea, a term for lack of periods. No one really knows why. I also have had chronic urinary problems since a small child, many infections, and now interstitial cystitis. I'm told no one knows why on that either. Mostly because little has been researched. Big surprise - it's mostly women affected.

After reading your site, it puts things in perspective. My pain, my discomfort, seems like nothing to these women. They are heros to me. Just persevering through it all, not to mention their dignity, is true inspiration.

If you haven't won an award, someone should be damned ashamed...

Les mando un abrazo.
Me ha gustado, realmente mucho, el trabajo que han hecho.
Me gusta.
Saludos desde Argentina.

A big hug to both.
I have really enjoyed the work that you have done.
I like it.
regards from Argentina.

Until viewing your site, I have been unable to mourn my losses to fibromyalgia. The beauty yet harshness of the images has given me that. Symptoms and intensity are so varied that there seems little hope. Through trial and error, the lucky ones find some help and relief; some of us never will. Thank you all for your excellent effort at providing understanding.

I'd like to say that your site is the most impressive one i've seen on the net. I am impressed by these women who have the courage to tell us their stories. I am not suffering from FMS myself, but I have become interested in FMS from a both feminist and medical point of view. I wonder how the history of FMS would look like if the main part of the sufferers were men... I have tinnitus, wich also is a chronic syndrome, so in some ways I understand. I am thinking of writing a book about FMS, but I am not sure if I am the right person to do it. I would also like to say that with all the progress in the medical research area I am sure that there will be a cure soon.

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[JUNE 1999]

when I read your web page I can relate to the pain to me It's there all the time and I have memory loss also I hope my DR. can dinose what I have do you take pain med. I some time get this pain on my side like I ran to fast and it takes my breath away kind of pain.
--M & K

Wonderful Site! Gives the message of what is like to live with a chronic illness.

I love this website. It renders our silent suffering with love and dignity. Thank you.

I want to reach out to those who are willing to listen because I have been cured of six years of chronic debilitating and crippling pain. Dr. John Sarno's books, Healing Back Pain and The MindBody Connection: Healing the Body Healing the Pain saved my life. I suffered for six years from chronic pain, and couldn't even walk or leave the house for the first two. I had all the usual diagnoses: herniated discs, facette syndrome, weak back muscles, fybromyalgia, etc. In eight weeks after reading Dr. Sarno's books I was completely healed and now live a normal life, full of happiness. In twenty five years of practice he has healed over ten thousand people who suffer from chronic pain. He is not a quack. He's a scientist who cares.

this is the most moving web sight i have visited. so far i have only read through Karen's story, but had to comment before i go on. for the first time i see web potential used to create a work that is not only some smart game of associations, but actually says something about human life.
--Debbie, Jerusalem

I just got off the phone with my daughter and in desperation decided to surf the net. You have a wonderful site that shows the pain my daughter suffers and I cannot describe. She is having horrible unrelentling pain, medications do not help, she can hardly speak through the fog of her pain. I hear the pain and my heart breaks for her...but I cannot console, or help, or take it away...I would gladly take the monster on..but it won't come to me. I miss her laugh, her wit, her sweetness. I miss her. It has taken me a while but I have had to finally accept that there is a different Kari and the daughter that used to dance, laugh, paint, draw, work is no longer there just the shell-surrounded by pain - I still hope - that she will have a chance to live a real life and have a real future but I wonder????

Thank you for your site - we must find a cure, we must find a treatment, but most of all we must be there for our loved ones that suffer so!!

As I sat here reading the site wrapped in a blanket with the furnace kicking in, it was great to see that I am not alone with all my problems with FMS, Chronic Fatigue and Chronic Pain.

I am freezing all the time and it makes no sense. I sit here wrapped in a blanket and my husband wears shorts. We make a great couple. He also understands that the loving touch I desire so much only makes me hurt more - and there doesn't seem to be any relief. If I take enough narcotics that his touch doesn't hurst, I also can't feel it well enough to really want it.

I commented one time that if I went to work on a stretcher, maybe my boss would understand that I really was sick. But even when I left work, there were so many who said I couldn't be so sick, I looked so well -- but they haven't seen me in two years, I don't look so good anymore.

Thanks for the honesty. I have felt that dispair and loneliness and to have someone tell their stories so eloquently is a real treat.

I have only one thing to say and it is for the hurting people who wrote. PLEASE get a copy of the book "Healing Back Pain: the mind-body connection," by John E. Sarno, M.D. The title says back pain but it applies to much, much more, including FM. This is one of those books that will change your life.

I joined the ARMY at the end of 26 yrs old. It was a life long dream of mine to be in the military. I was sooooooooo afraid of needles and continuously put off the blood test, until....I DECIDED to take it and do what I have always wanted to do. It was difficult, to say the least, being medically and physically tested to be in the military-but I DID IT!

I did very well in basic training. Showed those 18-19 yr olds what could be done! Broke my foot, but never complained until my drill sergeant noticed something weird in my walk. So...ran on a broken foot for at least two weeks and have the lump and pain to go along with it. Anyway, I went to Germany and the pain in my leg(s) would not subside. Doctors kept telling me that it was a strained muscle. After about 6 months, the pain was still there and a P.A. there had me do a couple of tests and it told him something kinda devastating to me. I had a bulging disc. The mylogram and mri confirmed it. I was told that if I didn't have surgery, I would be "chaptered" out of the army (processed out). If I did have surgery, I could stay in. Well, loving what I did, I said do the surgery. My unit dropped me off and left me there to have the surgery. Will never ever forget those emotional scars! I did very well in surgery, but they screwed up. Put me back to work 5 weeks later. It was too much. As a result, I was disabled. Missed out on an assignment to the Pentagon too! After two years in Germany, I was moved to San Antonio. The job was STRESSFUL, but so awesome. I loved it, having a degree in Accounting, it offered me so much! The pain ( to put in so few words) was more than I could bear. After numerous unfruitful trips to the doctor, I requested a discharge. This took 2 (two) long years to accomplish. In the interim, I suffered from peer pressure, not being able to do what my fellow soldiers did (worse in Germany!). They didn't want to let me go. I was in a quandry, loved my job-did it well, but couldn't do soldier "things". After things escalated, they (the Army) diagosed me with Fibromyalgia and recurring major depression and minor back problems!

Now, I am out of the military and trying to keep my life on track.

What's changed??

I am out of the military and have a job, but the problems still remain. Nothing there has changed. I am doing what I can, but drink liquor (beer) entirely too much to deal with the pain. Pain killers are temporary. What I need is support and an answer. Having someone cut my grass once a week wouldn't be too bad either!

Any help would be greatly appreciated!

Beautiful and wonderous.I see/feel the pain. I have SLE and CVID,a rare genetic immunodeficiency.You cannot" see "my diseases either.I was told there was nothing wrong with me for years.Lots of tests.Lots of doctors.I sandblast glass and create one of a kind art dolls.Through my art I feel alive.I'm going to tell all my CVID friends to come here to see what often we cannot give words to.Thank you for the images and words.They make me feel less alone,like someone out there understands my pain.

I've been fortunate. A wife, and mother to three wonderful children. My husband is a great jazz pianist. I've recorded his albums. Received rave reviews about the great job I did. I too am an artist and a published poet. At the age of forty I was diagnosed with degenerative disc disease. I was told to stop running or I wouldn't be able to walk. I dealt with it.

At the age of 52 I found myself not sleeping, and constantly in extreme pain. I couldn't lift things. Getting up from a chair and trying to walk without looking like Red Fox's character Fred Sandford, was a chore, needless to say embarrassing. To touch me in certain spots put me through the roof. I was beside myself. I had tolerated my back pain and the disappointment of the limitation it brought about, and Migraines since I was 10, but this was worse than all that combined. I told the doctor and was tested for certain things. Everything came up negative. So he sent me to a rhuematology specialist. I sat there watching them draw more blood for tests. In the last 3 weeks I think I gave up 3 pints of blood. But as I watched the blood drain from my body. I felt like they might as well take it all. I was becoming useless. The only way to diagnose FM is to rule out everything else. I was hoping for a virus. They go Away. This. . .Fibromyalgia never goes away. Now at least I am sleeping through the night. But will I have to take medication all my life. And for the pain will I have to take medication always? The discomfort is lessened for a time then comes back, never really goes away, always lets me know it's around the corner. I have accomplished much in my life. But I have so much more I want to do to create. It has become more difficult. Some one said FM was the in disease now. I like for her to suffer for one day what I will have to deal with the rest of my life. If you can call it living.

Thank you for web site. It is sad but good to know there are others who understand what I am going through. Also I was impressed with the creativity of the presentation. You have inspired me to express my pain through my art. Good therapy.

I was moved by your website. It is full of truth. It takes so much time, so much life, to come to the diagnosis. Then, no one believes you. I hope to show this site to my husband of 25 years.

Very fascinating! With the help of your photograph I think that I can navigate my own body and link you up.

Thank you for a very on target explanation of Fibro. I have a couple of friends that have it. I have Polymyalgia. I am sending this article to my friends. What really hits home is when people say "you don't look sick". When you can't even tie your shoes, get out of bed, hold a cup of coffee and many more menial daily things you do, then you really know what pain is. Thanks again for a great article.

Karen, you might as well have been reading my mind. I have had chronic fatigue syndrome (FM's equally nasty cousin) since 1981 and I am just sitting here stunned at your work. Bless you!

I have spent my afternoon viewing every little inch of your site. This is the greatest tribute to Fibromyalgia I have ever seen. Your approach to the known truths is worthy of an Oscar. You have created a totally awesome way of presenting the Fibromyalgia story.....Showing it is all on the inside. You must be a truly beautiful person, inside and out. As a FM suffer I thank you for this presentation. May God bless you and the others involved. I can't seem to find the words to truly tell you how I feel after viewing, I guess Thank You will have to do and hopefully you can interpret that as I intend it.

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[APRIL 1999]

I have to say I LOVED your site and if any of the women there want to contact a kindred spirit or just want to read about another please tell them and consider using my website as a link, though I understand that since it is not an art-pain sight you may not want to. You gave me some good ideas for coping with my pain. I've mostly done poetry and a lot of music, though not much original music yet, all covers. Anyways to the website!

It's called Sharing, Coping and Creating from Chronic Illness. I talk about some of the major problems for women in our medical system, then tell my story and give some poetry and beg for others to write me to do the same. So far I have 2 people with serious conditions working on their own major stories, so the site will continue to grow. It was featured on AOL's women's health site as a site of the week.

Thank you for your amazing website and I much empathy and admiration for all who contributed!

My dearest love suffers from FMS. I shall forever know her pain from the outside, of course, but your website looks in and lets me see. This is art at its best and I am more for having experienced it.

Thank you, Susan and you three women.

First, your website is absolutely incredible! Surely the most creative use of the medium I've ever seen. Yr work is splendidly beautiful, shockingly honest and technically superlative.

As to the content? Oh my! Never have I seen *me* with these eyes! Another person with FMS, checking in. One more voice to say that the pain is real, the condition disabling and the frustration of watching who you are disappear, little by little, is sometimes overwhelming. And this is simply a stunning portrayal of it all. Indeed one which I shall share with everyone I know.

Thank you! To the wonderful artist who created this piece, and to the women who shared their lives like this. Thank you *so* much.

I think I have been living with this desease all my life but was finally dianosed with it when I was 35. It was quite an experience to see your work and realize that it was desciptive of my pain and my life. Everyone says I look so heathy so why am I always in pain or never feeling like doing this or that. I WISH THAT SOMETHING ABOUT THIS DISEASE WOULD SHOW. If your leg is broken, you are in a cast and people can see that part of your pain. But when you live in pain every day, every hour, every minute of your life and there is nothing to show, nothing people can see and say Ha. there is the reason for her pain, it is more frustrating. It's like if there is no outward sign of your pain, then it must not exist. I have lived with doctors telling me for years that I could not be in pain, there was nothing wrong with me. My family thought I was always making it up, even as a child to keep from going to school or to get out of p.e. The frustration and anger this disease has brought me has almost been worse than the pain. It has caused almost as much mental pain as physical pain. Until now I guess I thought no one understood this except me. Thank you for your images and to the three women for sharing with us and thank you for allowing me to say something I guess I have needed to say for a long time.

It's a very good site, and covers things well. I've been suffering from fibro for nearly 20 years, and in the last five years have become medically disabled. Last year, I told my doctors I couldn't cope anymore, I'd run out of options and tools and skills, and hadn't been sleeping for a year, and was in so much pain all the time that I thought only of the end of life. I was 40. I went through a pain clinic evaluation after years of other experimentation by my doctors, and the doctors there said "she needs her pain treated". Now I'm getting my pain treated, and I can sleep again. I still have pain that exceeds the reach of drugs. But I can sleep again. I can't work. I can't walk very far anymore. I can't sleep some nights. But I can sleep again without waking up to pain at a 9 and dreaming of a bear biting me in half. Intimacy is difficult. Cooking and shopping and sitting upright are difficult. I'm cold all the time, and keep my polarfleece boots and gloves close by. I get goosebumps when I get into a warm tub. I get migraines. I have asthma, and irritable bowel, and raynauds, and bad knees and hips and feet and frozen shoulder, and pain in nearly all my joints and muscles...but I can sleep again, and no longer wish for death. I was a registered nurse, a technical writer, and a student of graphic arts and web design. I've applied for social security disability and hope they will come through for me, because I have no other way to support myself now. The future is very uncertain. I'm glad my children are nearly grown. I've warned them that they cannot count on financial assistance from me in the future.

I love your site. I am an eighteen year old who got diagnosed with fibromyalgia when I was twelve. It is wonderful to know that there are places and people out there who understand the pain, anger, and frustration that I am feeling. Now that I have visited your site, I decided to start painting my pain. Hopefully that will work since nothing else has. Thank you for your site.

These pages say it all. I often try to explain what it is I have and what it does to me. Somehow people just don't understand..."You don't look sick." This shows how looks can be very deceiving. I've sent this to all my friends and family with internet access. Maybe now they will understand. Thank you very much. It's really nice knowing someone without the disease truly understands.

Thank you for your composition. I have suffered with Fibromylgia for over 25 years and these pictures are realistic.

I was overwhelmed by the thoughts and pictures. It is beautiful and horrible at the same time. I spent quite a long time, viewing the feelings of those three women. Fortunately, I am not a sufferer of this disease, but have had some other problems in my life, that I can relate the pain and feeling of aloneness.

Great work, Susan, you are to be congratulated. To the others, thanks for baring your mind and bodies, so that we may look inside.

Your site is a blessing for those of us who cannot communicate our suffering to those who are not afflicted. I remember telling a supervisor that I wished I at least looked sick, so people would believe me. The mummy wrapping is very descriptive. I just want out of this body! Fortunately, I have a relationship with the living Lord, and because of that, I do extremely well emotionally. However, that does add to people's disbelief in the fact that my body is a trap for me. Thank you so much for your effort. It is deeply appreciated.

I am 51. I am one of the fortunate ones who was diagnosed after only approximately 18 months of suffering with FMS. I was diagnosed in 1996 after going through every test known to mankind. It all started for me, I think, with TMJ (1993). A physical therapist informed me that not everyone had pain when they were touched, like I thought was normal. Then in 1995 I had horrible edema (sp?). The FIRST doctor I went to told me it was "old age"! Needless to say, I have never seen him since. Thanks to a friend, I got in at Chapel Hill Hospitals in NC. That is where I was put through innumerable tests -- including the drug induced stress test -- as if I wasn't already under enough stress! The very last test she gave me was a full thyroid panel and discovered that I was hypothyroid after all was said and done. After that, I was still experiencing so much pain that this doctor called in a rheumetologist. But, of course, nothing showed up. Nothing ever shows up. It was a friend at work who finally diagnosed me! She has FMS/CFS and possibly Lupus, and she asked me if I had pain to the touch at certain points of my body. I said "no" but then touched my elbow . . . ouch. Finally, another doctor actually diagnosed me in 1996. Then it's the endless array of medications! I finally quit going to doctors. I quit taking medicines. I take a high potency daily vitamin, calcium, magnesium-malate, and drink lots of water. In order to sleep, I have to take either melatonin or Tylenol PM or Alka-Seltzer Plus. Sometimes, tho', (like last night) even that doesn't help me sleep very well. But, this life does march on, doesn't it? I can't wait to go up to Ohio to visit our daughter and her family and hold my little grandson. I don't care how much it hurts, I will hold my grandson.

Thanks again for your support.

I found your web site informative and interesting. I really enjoyed the way that you depicted the pain and feelings of the women in the piece. This is one of the better sites I have seen. When I found this site on Yahoo Picks, I thought it would probably be lame, but I was pleasantly surprised. Keep up the good work and help spread the message of these women's lives, and the lives of others like them. Great job.
Sincerely, Jay

This is a very neat site. I can relate to the invisible illness and pain. I have vestibular (inner ear) problems due to a head injury that have left me disabled and many times feeling like your images look. If anyone is interested in learning more about vestibular disorders, and in particular, my own situation, take a look at my web site Thanks for sharing!

"navigating the body" is quite literally the most powerful web site i've visited. 'so layered, textured, narrative, raw, political/feminist, and dare i say it, beautiful.

The site is very moving. I especially related to Rose's work. I am a painter and had not thought about painting about my pain. I am sure everyone hears about treatments, etc. but I finally found relief using Nikken magnets. I sleep on magnets every night. Sometimes I wear them on my body. For the first few months, I could feel the pain being peeled away, layer after layer. I feel so good now! I have my body and my mind back! I am so grateful--I thought I would be in a wheelchair soon. I have my life back. Thank you for giving us a visualization of our experience.

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