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last updated 18 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.
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.
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.
tres belles !
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
le site est trs bien malgré qu'il soit en anglais (:o(((
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 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
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.
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.
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.
Never before have I gotten this type of feeling from the internet.
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.
The art of life is living. Beautiful site and art!
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..
I am very impress by your web installion. I can feel the pain through the
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.
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
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.
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
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
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.
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,
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
Les mando un abrazo.
A big hug to both.
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
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.
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.
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
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????
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 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
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
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.
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 this......so, I guess Thank You will have to
do and hopefully you can interpret that as I intend it.
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!
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.
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.
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
Thank you for your composition. I have suffered with Fibromylgia for over 25 years and these pictures
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.
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 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.
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 http://home.att.net/~Smith-Merritt
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