Tuesday, June 18, 2013


As an Interstitial Cystitis patient, learning to live with chronic pain and illness is a daily challenge that those of us with this disease face each and every single day we wake up - that is if we even were able to sleep the night before! As we all know, IC patients are constantly fighting a never ending battle for better treatments, awareness, research funding and ANY relief from our pain we can find. IT. NEVER. ENDS. For those of us with IC, this is a daily battle! Once we receive our diagnosis, this is our life to learn to live with from now on! 

I'm sure we've all either heard or read about the Angelina Jolie op ed in the New York Times about her decision to have a prophylactic double mastectomy because she is positive for the BRCA1 gene which meant she had an 87% risk of developing breast cancer. Here's a link to the original op ed piece.

Ever since that article appeared in the paper, there has been an outpouring of media attention on her medical decision to have this radical procedure. There has been much talk of how brave she was for doing it and for coming forward and talking about it. A media frenzy would be, in my opinion, putting it mildly to describe the response to what she did. This has been getting even more coverage in the past two days since breast cancer survivor Melissa Etheridge came out making comments about calling Ms. Jolie "brave" for her decision to have this radical procedure. Ms. Etheridge took issue with calling Ms. Jolie's decision "brave". I think I agree with Melissa Etheridge.

I do not wish to diminish her medical decision; I am 100% against COMPARING illnesses and saying things like "mine is worse than yours" and I am always in favor of taking control of our own health by doing what we feel we must do is right for our own situation. I am confident it was not easy, as she writes, the surgeries painful and frankly ANY woman who has to undergo a mastectomy with reconstruction, and often radiation and chemo would be, in my opinion, brave. I do not, however, think she is braver-ER than any woman that has to go through the threat of breast cancer let alone getting it and battling it and hoping to beat it. I have friends that have battled - and are winning - the fight against breast cancer. Breast cancer is in my family. My Mother's sister died due to breast cancer and I had a very close call myself, having an egg sized lump removed from my left breast which, luckily was benign.  After my surgery to have it removed, my doctor at the time told me then that he was not expecting a good outcome. He never worried me before surgery, but went about getting me into the O.R. as quickly as possible and removing this rather large lump. He was an excellent surgeon and because the lump was so large, I required some reconstruction. He told me if he did not do the reconstruction using surrounding tissue, due to the size of the lump, I would have been left with a "dent" in my breast. He told me that not all doctors bothered with doing that at the time, as it took longer in the O.R. This was 10 years ago and so much has changed since then. Just read Angelina Jolie's op ed to understand what can be accomplished for women today who need to have a mastectomy. One of my best friends has had a double mastectomy with reconstruction, but she was not as lucky as Angelina Jolie and her reconstruction was unsuccessful. So it is not as simple and easy as she makes it out to be.

But with all this talk about how brave Ms. Jolie has been, I have been feeling somewhat frustrated because even though she made a difficult decision, she has been assured that all will be well for her. Her chances of getting breast cancer are now as low as 5% or less. I'd take those odds.  She wrote about how she can tell her children not to worry about her health. She wrote about how supportive Brad Pitt has been to her through her journey; she is lucky to have that.

She wrote about how "Breast cancer alone kills some 458,000 people each year, according to the World Health Organization."

But here's the thing that I, as an IC patient wants to point out. Contrast that with the the 4-12 MILLION men, women and children suffering every single day with Interstitial Cystitis vs 458,000. This is not to try to "rank" diseases. But merely to point out that those of us suffering and struggling to find relief and good medical care for our IC far outnumber those battling breast cancer. 

But where is IC's "Angelina Jolie"  that will write about what having to LIVE with IC every day is like? Who among us is even given the opportunity to publish an article in the New York Times about how to LIVE with this chronic pain? Who is our advocate telling the story of how often IC patients are not able to find good treatments, struggling to pay for what treatments there are; where's the conversation about the depression of living with chronic illness and pain and facing losing your job, or making the decision to go on Disability because we can't have surgery and nine weeks later show up on the red carpet in a designer gown telling the world how we were able to insure our future health?

I believe so strongly that each IC patient that is fighting this never ending battle, trying to find relief, getting up each and every day and going about our business is BRAVE! We are warriors! Because right now, there is no known cause for IC! No cure for IC! Insufficient treatments for IC! Yet we get up, many taking care of their families while battling their IC and pain. Learning to LIVE with IC is BRAVE! 

As I stated above, this is not about making this a contest or diminishing what women dealing with breast cancer are dealing with. But unlike Ms. Jolie, who can now move forward with her life because she was able to take advantage of expensive progressive treatment options and afford the expensive ($3,000) test to help her decide how to treat herself, those of us with IC have to continue to live with our disease for the rest of our lives - unless there is a major breakthrough in research very soon!

Most IC patients do not have these options. Many don't have a supportive spouse who can afford to take off work whenever they want to be by their wife's side during surgeries and countless doctor appointments. Even if they do have a supportive spouse who would gladly do so, most are unable because they can't take the time off from work! As Ms. Jolie writes, it was 3 months of surgeries and she's done. How many of us wish our treatment took 3 months and we'd be all done? I've endured 13 surgeries in 12 years since being diagnosed with IC and I know the millions of IC patients suffering every day have similar stories to tell.

To me, this is the epitome of bravery. Learning to cope with never ending pain and chronic disease is, to me, the bravest thing any of us do. And most of us don't give ourselves enough credit for it! We should! Never giving up; researching everything we can to find good treatment options for ourselves. Learning to be our own best advocates. Supporting the ICA who fights tirelessly for IC funding, awareness and medical and patient education. These people deserve to be acknowledged for their Bravery in my opinion!

But nobody is writing about IC. We don't have an "A-list" celebrity that has IC that will come forward and speak out about it. We don't have any high profile doctors, celebrities or health organizations getting out there and raising awareness like Ms. Jolie and all the female celebrities who have spoken out about their battle with breast cancer. To see all these people speaking out it would lead you to believe there are are more women fighting breast cancer than any other health condition and that would be wrong. Heart disease is the number one killer of women in this country but it now has the "Go Red" campaign with lots of celebrities joining that bandwagon to spread the word. About 600,000 people die of heart disease in the United States every year–that’s 1 in every 4 deaths. But heart disease IS preventable! These numbers don't have to be this high; medicine KNOWS how to prevent heart disease. That mystery has been unlocked.

So, again, compare that number to the millions suffering on a daily basis with Interstitial Cystitis. We don't know what causes it. We don't have a cure. And we don't have sufficient treatments. We number in the millions and we don't have the money pouring in for research like breast cancer and heart disease, yet we far outnumber people fighting those diseases. The ICA was on Capitol Hill last week lobbying Congress to restore research funding to the NIH for IC research! But compared to the money pouring in for breast cancer research, we are the "ugly stepchild" by comparison with the ICA fighting tirelessly (thank you ICA) to get what research funding crumbs we can to help unlock the mystery that is IC!

So, here's to every single IC patient out there that is fighting their battle with IC and associated conditions, not knowing when or how or if we will ever see the level of relief that will give us the quality of life Ms. Jolie now has. You are my IC Warriors and you are BRAVE!

1 comment:

  1. i will go back read angelines v statement. I saw on tv melissa ethridge has same gene and had same 87% chance getting cancer......she chose not have surgery and got cancer. two patients makeing different decisons and two different outcomes. well written tired hearing about it on media wish I had her energy to get out bed daily and travel etc . well written