You will forgive the hoarseness of my voice. I see many faces that were there last night and I want to thank everyone for coming to the Ball and also say welcome. It is exciting for us to do this Patient's Day today because it is important for me personally but also as an organization that every person or every group of people who are affiliated with this disease in some way or are touched by it has their own voice.
One of the reasons that I started, I am going to sit down because I had a lot to drink last night, not shy to say it. One of the reasons I started Endofound with Dr. Seckin is because not only did I feel like I had no voice, the whole time that I was growing up this disease was growing in me alongside of my own evolving self. I also feel now that had there been more forums like this and had other people been able to voice their experiences, or as medical professionals their observances or their experience with just treating people, that I would not have gone through the medical system as I did. For anyone who has been to our nurses' conference or was there last night, I also think that that might have prevented MacKenzie Ryan from going through what she did.
At the medical conference and at the nurses conference we speak a lot about what the disease is, how it manifests itself, how we can identify it, target the best treatment for each individual, how we can change policy and all of that. What we are starting to talk about now, and what I would encourage you, along with holding our hand, to talk about in your communities, is how the disease affects the patient and their family in a myriad of other ways that do not show up on a microscope. And how this illness pervades every fabric, every aspect and corner of a woman's life.
For me the disease was very lonely. I was surrounded by people who loved me. I was surrounded by people who were very capable, along with me, of getting help for me that I needed but we had not talked about it thoroughly. I do not want that to happen to anybody. I do not want that to happen to the next generation of women. But I also do not want that to happen to the hundreds and thousands and millions of women who are like me still out there who are not 15, who are actually maybe 45 and still kind of cowering in the back of their office so that their colleagues will not know, or afraid to really speak honestly with their husbands, because they do not want them to know in a way.
That is why I think forums like this are very important. Obviously all of you know a lot about endometriosis in your various capacities but it is such an isolating disease. It is also a disease - even if you intellectually know what you have, know how to eradicate it, know what the various treatments and maintenance procedures are to keep it in control. It is a very ephemeral emotional malignancy. That is the best way that I would describe it. Especially for me, I am not a psychologist. I am not Dr. Seckin or Harry Reich and I can speak to you only about my personal experience.
The disease grew part and parcel with my own womanhood, with my sexuality. And so, in a way it contorted and altered certainly how I felt about myself, how I felt about my strength as a woman but also just as a human being because I thought I must be a real sissy. What is it about me that this is having such a greater impact negatively on my life? Last night, when MacKenzie spoke about how her own family found it difficult to really understand what she was going through, I really do not believe that is because they do not love her. I believe that they just did not know. Like many people who wanted and tried to care for me, whether they were my doctors or my mother, or my family, or my friends they just did not know any better.
I want more rooms like this to happen in whatever number or shape they are appropriate to happen in because I want everybody to know better. I do not want any teenage girl, my daughter included, but you know, my friends' children and everyone I pass when I am walking to get a cab, getting on a school bus - I do not want that girl to feel crappy about her body. There are enough external forces that will impede a young woman's growth and blossoming. We do not have to add to that list.
Yesterday at the medical conference there was a question that was asked, should endometriosis be classified as a disability. This is my personal opinion; no it should not because it should not be. It really should not be, not today and not with laparoscopy, not with all of the other methods we have at hand. One person's pain is not like another person's pain. I am sure I did not have it as hard as another patient with similar background and case history because she is from a different family, she is from a different area of the world; maybe she is handling it better or worse. But for me, I did not like being a victim to my own body. I wanted to have dominion over my own life. And I wanted to have the same opportunity to try to make it into the hockey team or do well in my math class or help my mum when she was cooking for our family. I wanted the same opportunity that I saw other girls have. When what is wrong with you is coming from inside of you it is hard to think that in some way it is not your own fault and we know that it is not.
I really thank you all for being here. It is wonderful every time I walk into these rooms to see all these different faces, not only of doctors and patients but of those people who support this cause for whatever personal or professional reasons they may have. Thank you so much for being here.
