Catherine (Cath as she is known to her family, friends and to her many IC patient acquaintances) M. Simone is a well known (and very well-loved) IC patient (recovered), IC patient advocate and she has self-published three books which were one of the first books to shed light on living with Interstitial Cystitis from the voice of an actual IC patient. Her books, and DVD are available through her website
www.ic-hope.com as well as through www.amazon.com or www.evenbetternow.com
Carin: Cath, thank you so much for the opportunity to discuss your books and living with and recovering from IC. I always refer your IC books to anyone who contacts me whenever they are newly diagnosed with IC as I find your personal story and message of hope and recovery to be invaluable during those tender first days of an IC diagnosis. As an IC patient myself (also now in remission) I found all of your self-published books about living with IC, self-discovery about utilizing diet and herbals to treat the disease,and the epiphany that IC is not simply a bladder disease to be incredibly helpful for my own IC journey. What are your thoughts about IC awareness and advocacy in 2012 in comparison to when you first struggled with IC and wrote "To Wake in Tears"?:
Cath: I’m really glad you found the books helpful to your healing and I’m so happy for you that you’re in remission. : )
I wish I could say that I’ve noticed more of a difference in terms of awareness within the general public, but I think that most people still have never heard of Interstitial Cystitis. Raising awareness within the medical community among doctors, as well as raising awareness within the general public, has always been more the focus of the medically oriented IC organizations. My focus has always been on raising awareness within the IC community that there is hope to heal from IC. I feel that this awareness is desperately needed among those suffering. It is still the norm for patients to be told that there is no cure and that they will have IC the rest of their lives. Even though it is true that there is no medical cure for IC, there are many of us out here who have healed from IC using alternative treatments and a holistic approach. This message has not been well received among those within the medical community or by those supported by the drug companies. Obviously it was even less well received back in 1998 when I wrote “To Wake In Tears: Understanding Interstitial Cystitis.” This is the main reason why my books are self-published. It is a difficult message to get out through mainstream channels. My message has always been about empowering IC patients. In the midst of our suffering we need to hear that we have the ability to help our bodies heal. To another point, whether at the doctors’ office or emergency room, advocacy on behalf of the individual IC patient is still severely lacking. Sadly, I still hear stories of patients being mistreated in similar ways to how we were treated back in the 90’s.
Carin: What advice would you give to a newly diagnosed person with IC about diet, treatments, etc.?
Cath: Well that’s a huge question. But briefly, I would want them to know right away that there is hope to heal from IC and that there are many of us out here who have healed from it. Just because there is no medical cure for IC, it doesn’t mean that you can’t get better. In fact, all the people I’ve known over the years who have healed from IC have used alternative treatments and a holistic approach (including myself obviously). I would want them to not be discouraged by what they are reading and hearing from those who admittedly don’t understand IC. Believing that you won’t ever get better will certainly not help the healing process. It has always been upsetting to me how hope is taken from IC patients. I would want them to know that yes, we are all different and what helps one person might not help the next, but that doesn’t mean that they should haphazardly try anything and everything. It is very important to get to the root of what is going on in your own individual IC situation. Although it’s totally understandable why, most patients end up with a sort of shot in the dark treatment plan because those in charge of designing their treatment don’t understand their particular case of IC. We don’t all have the same cause or causes to our IC symptoms. We don’t all have the same symptoms throughout our bodies. We don’t all have the same sensitivities. You asked about diet and that’s a good example. Not all IC patients are affected by what they eat. Some people have the same symptoms no matter what they eat or drink. Others are hugely affected. So I would be careful to read as much as I could and learn from other IC patients before buying into the standard lines most of us are told.
Carin: I know that a lot of IC patients have been touched by your personal story and recovery from IC. What lead you to write your first and then subsequent books about living with and recovering from IC?
Cath: I can still remember the moment that I decided to write my first book. I was in the bathroom (I know you’re shocked LOL) shortly after being diagnosed, bleeding, in total agony, couldn’t urinate, had been sitting there on and off for hours and I was angry and really scared. I just couldn’t belief that people were suffering like this and that no one cared or was doing anything about it (or at least that’s how it seemed to me). I had been diagnosed just days before with ulcers all over my bladder and told what we are all told “there is no cure”, you will have to “learn to live with it”. I remember telling Charlie, through gritted teeth, from inside the bathroom, that I was going to figure this out. I was going to get better and I was going to write a book to help other people get better because this is just WRONG. No one should have to live like this. No one should have to suffer like this. There was something in me that felt it was my destiny. And if it wasn’t, I was going to make it so. I was not going to give up my life and my future with Charlie. I refused. And I would never have learned what I learned without trying to share it with others who were still suffering. It would have been very un-me to do that. I ended up writing my second book, “Along the Healing Path: Recovering from Interstitial Cystitis”, as a response to all the questions I was getting from my first book. I wanted to provide more information for those who wanted to take a similar approach to their healing. My third book “Awakening Through the Tears: Interstitial Cystitis and the Mind/Body/Spirit Connection” was an extension of or conclusion to my first book To Wake In Tears. I also wrote it because I wanted to share the connection between hormones and IC. I knew it was a huge connection for many IC patients and I didn’t learn enough about it until after writing the first two books. The third book was also meant to tie it all together. All these different possible causes, how they can play off of each other and create a cycle that is difficult to break, it’s all discussed in that book. I also had wanted to share the information about the mind/body/spirit connection since writing my first book but I wasn’t sure that people would be ready for that stuff back then. Just saying that “IC is not just a bladder disease” was a controversial enough statement back then to many people.
Carin: I remember reading in your books that you discovered by experience that there is a strong connection between the mind, body and spirit and in order to heal completely you have to address all three areas. What was the most surprising moment for you during this discovery along your journey back to health?
Cath: I wanted to use every healing tool at my disposal. I had always believed that there is a connection between our mind, body, and spirit. I wanted to use that connection in order to help me heal. This is a sensitive topic for people who are sick and many healers or alternative health practitioners can be quite insulting in their discussion of this connection. I was on the receiving end of many stupid comments myself. I was concerned initially to discuss anything on this topic for fear of offending someone. However, what I learned is that the fact that the mind, body, and spirit are connected doesn’t mean that it’s “your fault” you are sick, nor does it mean that it’s “your fault” you’re not better yet. But to some people it does. I don’t agree with that view. Once you get passed that, you can find much helpful advice and insight. I do think it’s important to look at the connection between your emotions and your health or your thoughts and beliefs and your health. I do believe that toxic people and toxic situations in our lives have the potential to make us physically sick with whatever ailment (not just IC). And I do believe that it’s important to understand the connection between how we take care of our bodies, mind, and spirit, and how our healing is progressing or not progressing. To answer your question more specifically, I was surprised to learn that I could have such a big impact on my own healing just by being nicer to myself and by making sure I didn’t let others be “not nice” to me. I had to remove toxicity from my body and my life. It all goes together.
Carin: You have had a strong supporter in your husband, both in recovering from IC, but also in sharing your IC story. How important are the connections and positive support from family and friends in helping IC patients on their path to recovery?
Cath: They are so important. I was lucky to have Charlie. I wasn’t so lucky with others. I know what it’s like to lose friends and have little to no support from family. It’s very difficult. I’ve always said that the emotional pain of how I got treated when I was sick with IC, not just by the doctors and alternative doctors, but also by the people in my life, it was the hardest part to get over. Just like with any other illness, those who heal fastest are those with emotional support from family and friends.
Carin: If you had the chance to give yourself a message when you were first struggling with IC and not thinking there was any hope for health and healing what would you say?:
Cath: If I could travel back in time I would go back and tell myself to not be so afraid. I would tell myself that I was going to be okay, that I would figure it out one step at a time and that my body knows how to heal itself. I just have to give it what it needs to do that. I would tell myself to be nice to myself, to not care what other people say or think about me having IC or not being able to do what I used to be able to do. Mostly, I would tell myself to not be so afraid, that I WILL get better.
Carin: That is a very powerful message and your message of hope in your books was definitely part of the catalyst for me to figure out how to recover from IC. Please share any thoughts you might have about new IC treatments that are currently available (or might soon be available to IC patients) such as stem cell treatment and lidocaine implants:
Cath: I’m much more excited about natural, non-invasive treatments than I am about anything implanted in the body. Stem cell treatment might be terrific someday as long as you also are getting to the root of what caused the IC in the first place. Otherwise I would assume IC would come right back. I see much more hope for IC patients within alternative medicine due to the nature of IC.
Carin: Your IC books helped me during my most desperate moments with IC and I found your message of hope and healing to be invaluable. There are countless websites, blogs and chat forums now available for people struggling with IC and it is sometimes hard to weed through all of the information that is available on the Internet. How important do you feel these on-line forms of support are for someone struggling with IC and do you have any thoughts or insight in how all of this information might in some ways be detrimental for an IC patient?
Cath: First, thank you so much. I’m happy to have provided some comfort through the books. I totally agree with you. I do think the on-line forums are both helpful and harmful depending on where you are looking. Reading that there is no cure and witnessing no one getting better on the more medically oriented sites provides very little comfort and can be very depressing. I know so many IC patients who stop looking on-line because it’s too depressing and discouraging. Even sites that appear very legitimate, you still have to be careful. When you see ads for pharmaceuticals posted, membership fees, and products being sold, you’ve got to take their advice with a grain of salt knowing that there is an ulterior motive. The forums that allow an uncensored environment like Facebook or message boards managed by those who allow people to have differing opinions are the best places to go because there you can get support, learn about new things to try that might be a little outside the box, and usually be able to see people who are actually healing. Those places are filled with hope and support.
Carin: Thank you so much for the opportunity to interview you about your thoughts about living with and recovering from IC. Are you able to share any news about upcoming books or projects that you might be working on?
Cath: First I just want to thank you for the opportunity to speak with you today. I also want to thank you for all you’re doing on behalf of IC patients. The more recovered patients out there sharing hope, the better. In terms of new projects, I just released a DVD last year for IC patients who are either newly diagnosed or new to alternative treatments for IC. It’s a DVD filled with IC patients from around the world who have healed using alternative treatments and a holistic approach. It is meant to provide hope in an even more tangible way than my books because not only do you see the faces of those who have lived your experience with IC, you see them later in the DVD doing so much better. You learn about a holistic approach to understanding IC and healing from it without having to read a book. Many people over the years would tell me that it was hard for them to read and research when they were sick. I thought a DVD would be so much easier. I also wanted IC patients to have something to easily be able to show family and friends to help them understand IC. Or at least to understand it in a way that hopefully would cause their family and friends to provide them with a bit more compassion and understanding. The DVD is called IC Hope: From one IC patient to another. I am working on a fourth book that I hope to release next spring or summer.
Carin: I know that I speak on behalf of all IC patients when I say that I am already looking forward to your next book. Thanks for taking those courageous steps back in the late 1990s to write about your experience living with and recovering from IC and for all of your continued efforts to spread your message of advocacy and hope for IC patients.