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Letter to Oprah - feel free to copy
Hi all:
My New Year's resolution this year is all about becoming more proactive in terms of getting the word out about IC. For those of you who would like a template letter to send to talk show hosts, please feel free to use the following:
Lynne
Dear Oprah:
The voices of close to 700,000 Americans are begging you to bear witness to their pain and suffering. We need help and we need it now. Most of us who "live" with interstitial cystitis are dealing with a nightmarish reality that few others can relate to and/or possibly imagine. Our pain is so intense and debilitating that it has been likened to the pain of terminal, end-stage cancer patients. Only for us, there is no end to the suffering that we must endure.
Interstitial cystitis is thought to be a systemic disease that ulitmately targets the bladder, causing it to shrivel, hemorrhage and spasm. If you've ever had a urinary tract infection, multiply the pain of that by about 100 and imagine it never going away. Could you live like that? Would you be the same person, or would part of who you are die? Persons with IC, ninety percent of whom are women, have a constant burning in the bladder that is relieved only by voiding.
In fact, for some ICers, urinating up to 70 or more times a day is necessary because their bladders are basically like open wounds upon which toxic waste (urine) is being dumped all day
long. Unfortunately, removal of the bladder is almost always never an option for such patients because studies have shown that the pain of IC continues to be felt by at least 50 percent of those patients who opt to have their bladders removed as a last resort.
In addition to the above, persons with IC are far more likely to suffer from fibromyalgia, irritable bowel syndrome, lupus, schleroderma, Sjogren's, vulvodynia, allergies and chronic fatigue syndrome, most of which are thought to be auto-immune diseases. As you can imagine, most people with IC also suffer from depression which can be all-consuming and never-ending. (In fact, suicidal ideation is 3-4 more times above the national average for IC patients, and sadly, some patients with IC have resorted to taking their own lives.) Clearly, dealing with IC is a daily struggle for most ICers because it affects one's life on so many levels. Everything from parenting to working to having relations with a spouse can become next to impossible for people with this disease.
We know this isn't a pretty subject, Oprah, nor one that most people would like to think about, but there are simply too many people living with IC to continue this trend. Awareness and understanding of this disease, for which there is no known cause or cure, not to mention decent treatment options, is imperative if we are ever to receive the support, attention and research monies that we so desperately need.
It is time to come out of the closet. For far too many years, before interstitial cystitis was officially recognized by the medical community, sufferers (mostly women), were thought to be hysterical by their (mostly male) doctors. They were told they were sexually repressed, suffering from anxiety and/or emotionally unstable. Campbell's Urology, THE textbook for urolgy residents in the '60s and '70s actually referred to interstitial cystitis as "...a disease that is taunting in its evasion of being understood - may represent the end stage of a bladder that has been made irritable by emotional disturbance."
These so-called professionals actually believed that patients were somehow to blame for the status of their diseased bladders. Can you imagine the mental anguish imposed upon such patients until fairly recently (the 1980s)??? To those of us with IC, it's a secret from the not-so-distant past that the medical community must own up to and publicly acknowledge.
Since so many of us with IC are on disability and
unable to work, we have limited incomes and cannot contribute much in the way of monies for research; thus, we are almost entirely dependent upon funding from the National Institute of Health (NIH) and the Interstitial Cystitis Association (ICA), which, to date, has been woefully inadequate to say the least. Oprah, we need your help. As our country's foremost advocate for women, we beseech you to bring awareness to this dreadful and degrading disease which has adversely affected the lives of far too many women, men, and, yes, tragically enough, even children. It is truly a devastating illness that impacts not only the sufferers, but those that love them as well. Please help all of us to help ourselves. Having our voices heard after too many years of having them silenced would mean so much to the IC community. Thanks in advance for any consideration that you can bestow upon us.
Sincerely,
The IC Community
My New Year's resolution this year is all about becoming more proactive in terms of getting the word out about IC. For those of you who would like a template letter to send to talk show hosts, please feel free to use the following:
Lynne
Dear Oprah:
The voices of close to 700,000 Americans are begging you to bear witness to their pain and suffering. We need help and we need it now. Most of us who "live" with interstitial cystitis are dealing with a nightmarish reality that few others can relate to and/or possibly imagine. Our pain is so intense and debilitating that it has been likened to the pain of terminal, end-stage cancer patients. Only for us, there is no end to the suffering that we must endure.
Interstitial cystitis is thought to be a systemic disease that ulitmately targets the bladder, causing it to shrivel, hemorrhage and spasm. If you've ever had a urinary tract infection, multiply the pain of that by about 100 and imagine it never going away. Could you live like that? Would you be the same person, or would part of who you are die? Persons with IC, ninety percent of whom are women, have a constant burning in the bladder that is relieved only by voiding.
In fact, for some ICers, urinating up to 70 or more times a day is necessary because their bladders are basically like open wounds upon which toxic waste (urine) is being dumped all day
long. Unfortunately, removal of the bladder is almost always never an option for such patients because studies have shown that the pain of IC continues to be felt by at least 50 percent of those patients who opt to have their bladders removed as a last resort.
In addition to the above, persons with IC are far more likely to suffer from fibromyalgia, irritable bowel syndrome, lupus, schleroderma, Sjogren's, vulvodynia, allergies and chronic fatigue syndrome, most of which are thought to be auto-immune diseases. As you can imagine, most people with IC also suffer from depression which can be all-consuming and never-ending. (In fact, suicidal ideation is 3-4 more times above the national average for IC patients, and sadly, some patients with IC have resorted to taking their own lives.) Clearly, dealing with IC is a daily struggle for most ICers because it affects one's life on so many levels. Everything from parenting to working to having relations with a spouse can become next to impossible for people with this disease.
We know this isn't a pretty subject, Oprah, nor one that most people would like to think about, but there are simply too many people living with IC to continue this trend. Awareness and understanding of this disease, for which there is no known cause or cure, not to mention decent treatment options, is imperative if we are ever to receive the support, attention and research monies that we so desperately need.
It is time to come out of the closet. For far too many years, before interstitial cystitis was officially recognized by the medical community, sufferers (mostly women), were thought to be hysterical by their (mostly male) doctors. They were told they were sexually repressed, suffering from anxiety and/or emotionally unstable. Campbell's Urology, THE textbook for urolgy residents in the '60s and '70s actually referred to interstitial cystitis as "...a disease that is taunting in its evasion of being understood - may represent the end stage of a bladder that has been made irritable by emotional disturbance."
These so-called professionals actually believed that patients were somehow to blame for the status of their diseased bladders. Can you imagine the mental anguish imposed upon such patients until fairly recently (the 1980s)??? To those of us with IC, it's a secret from the not-so-distant past that the medical community must own up to and publicly acknowledge.
Since so many of us with IC are on disability and
unable to work, we have limited incomes and cannot contribute much in the way of monies for research; thus, we are almost entirely dependent upon funding from the National Institute of Health (NIH) and the Interstitial Cystitis Association (ICA), which, to date, has been woefully inadequate to say the least. Oprah, we need your help. As our country's foremost advocate for women, we beseech you to bring awareness to this dreadful and degrading disease which has adversely affected the lives of far too many women, men, and, yes, tragically enough, even children. It is truly a devastating illness that impacts not only the sufferers, but those that love them as well. Please help all of us to help ourselves. Having our voices heard after too many years of having them silenced would mean so much to the IC community. Thanks in advance for any consideration that you can bestow upon us.
Sincerely,
The IC Community
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