March 12th, 2001
Wayne State University, Detroit, Michigan
Beverly J. Doucette
Two years ago I was fighting one of the biggest battles of my life,
I was fighting FOR MY LIFE!
I suffer “Adhesion Related Disorder,” and I have suffered with
it for 16 years.
All but two of those years found me searching, begging, fighting and
battling my way through Dr. after Dr., surgery after surgery, only to find
that what I thought was going to be a resolution for my pain and suffering,
turned out to complicate it even more! My experience is by no means unique
to me as it is repeated time and again to most people who live with ARD!
What happened to me back then was simply due to my being uneducated
about my own physical symptoms, and if anyone were to ask me why I wasn't
educated about ARD, I would tell them that there was no way
that I knew of to secure any information about it. Day after day of searching
through the internet, there was no mention of "adhesions"
relating to the human body, nothing was mentioned to me by
the attending physicians, nor by the surgeons, and last but
not least, I could not find any information regarding my
symptoms in any reading materials I had access to...
which was quite a few by the way!
It simply was not talked about, even when I went to nursing school,
I never heard the word adhesions ever mentioned!
It is easy to understand “Post Surgical Adhesions,
Simply put, “ they stick your internal organs together following a
But ARD is anything but simple and this conclusion is more then obvious
when one looks into the
International Adhesion Societies posting board!
The reason we are all sitting in this room today is the result of seeing
far to many desperate people seeking understanding for their suffering,
begging for help for their pain, fighting to be recognized for their disease
and searching for an explanation for what they have!
I allowed my medical care providers to do anything to me without
question, I trusted them without a single doubt that they would do anything
but help me get better
to live an active, pain free and comfortable life! That type
of intervention was not to be found for me anytime soon, instead I was
subject to even worse pain and suffering following each surgery!!
To add insult to injury, I was never offered any information as to
why I suffered what I did. I was not only suffering physically, I was tortured
psychologically and emotionally by the lack of knowledge that seemed to
surround this disorder.
If there was anything positive in any of this, it was that after a
number of surgeries and having the pain and associated symptoms of ARD
return to plague me repeatedly, I figured out that something wasn’t right
here, so I started to question thing’s and I haven’t stopped!!
I’m not going to say that I don’t have some anger and disgust about
all of that, as I do,
I am not going to say that what happened to me and to thousands of
others who suffer with ARD isn’t the result of negligence, or that it wasn’t
due to those within the medical field having no more of a clue about how
to effectively resolve my symptoms then I had.
I don’t know why this happened to me and I don’t know why it continues
to happen to others, as what happened to me,
did not have to happen!
I may not have been able to be saved from physical suffering by those
who I turned to for intervention, but most certainly, I could have been
told that my pain was real, and that my affliction had a very real cause,
thus, I would have been able to find some peace within my
pain and suffering and been spared many lonely and frightening times as
I pondered my own sanity! Had my Dr.'s followed their “HIPPOCRATIC OATH”
to not cause me more suffering then I presented to them with, both my family
and I would have been spared pain that is not rooted so deep
within me that yet today I fear
any medical intervention I may warrant and do not secure!
I realize that one day, I may die from something that very well
could have been cured had it not been for my lack of trust in those who
I entrusted my very life to and failed me.
What I do know is that I did not fail myself and today I am standing
here healthier then I have ever been in 16 years!
This tells me that there ARE answers, and that there ARE
ways to reach out and effectively help the sufferers of
"Adhesion Related Disorder!"
Maybe help will not come in the form of finding relief from the pain
and suffering of this disease, but I know that, “ peace ” CAN be found
EDUCATION, COMMUNICATION, COMPASSION, and RESPECT
of the ARD sufferer!
When those simple measures are not met, it is not the Dr.’s who suffer,
nor is it society as a whole who suffer, it is the person and their families
who are living with ARD that suffer!
Justice has been referred to as,
"the soothing balm to be applied on those wounds
inflicted by societies lack of awareness"
It doesn’t matter the age, gender, or race of the adhesion sufferer,
a gapping wound is laid open every time they present with pain and suffering
and are met with
IGNORANCE and LACK OF UNDERSTANDING
from society as a whole!
But when there IS no justice, those wounds can never be cleansed and
never be healed!
President John F. Kennedy said it best:
And I quote,
“ We face a moral crisis as a country and as a people,
those who do nothing are inviting shame and suffering,
those who act boldly are recognizing right as well as reality!”
On behalf of all persons who suffer Adhesion Related Disease,
I am asking that you hold all those within the medical society
what is right and moral,
because it IS just and Lord knows it is time!
Is it ever to late to do the right thing?
For the sake of justice, and for the hope of all those who suffer
I sincerely pray it is not!