Transcript

DONNALEE: I think one of the things that I was very sensitive to is I from the start decided I was going to live a long life, and one of the earlier doctors I encountered treated me like I wasn’t. That was a big issue. I don’t work with that doctor anymore, needless to say. (0:00:24) But I think within especially the medical community, but the community at large, people have to be positive and support you and believe in you and believe in your ability to beat cancer. (0:00:39) Even if it ends up that it doesn’t turn out that way, at least you’re living a positive, productive life and not wearing this curse around your neck.
DUSTY: On a personal level, the stigma just kind of gives you a sense that people are judging you, kind of condemning you. (0:01:01) They don’t mean to do that. I know they don’t mean to, and yet that’s the result. But it not only impacts me personally, but my loved ones. When my daughter tells somebody that her mother has lung cancer, she’s struggling with this and she’s afraid she’s going to lose her mother. She’s turning and looking for support and compassion from others, and then she gets the same question: Does she smoke? (0:01:31) It’s a slap in her face too. I can handle it, and my daughter can handle it too, but I hate that they have to go through this on top of everything else. People who lose their loved ones, it’s really troubling to me that they carry this shame and this stigma with them even after they’ve lost their father, their mother, their sister, their daughter. A lot of times when people die they don’t even say it was lung cancer. (0:01:57)They just say it was cancer, because they don’t want to continue to deal with that slap in the face. They already have enough pain, and they don’t need that additional pain. That’s one reason why I think we lack the advocacy numbers that some of the other cancers have, because this stigma it sticks to our loved ones as well as to us. But even more important than the personal stigma that comes with this disease, I believe, is the damage that it has done to the research dollars. (0:02:30) This stigma is what has prevented us from getting the research funding, I believe. Again, in the early days of AIDS, there was the same thing – a stigma, lack of research funding. Then when the advocates came together as one voice and said this is wrong, this is evil in fact, eventually people just realized oh yeah, let’s open our hearts. This is not the American way. Have compassion for people. (0:03:00) Then the research dollars started flowing. I believe we’re behind the 8-ball here in lung cancer, but nevertheless that’s what we need to do is to help people understand and see that. Let’s forget about this stigma, and let’s just fund this disease so that we can get a cure.
MATT: When I mentor and talk to my fellow lung cancer survivors, whether they’re smokers or nonsmokers we all share that same desire to really understand. (0:03:34) Why me? I really feel that it’s strengthened my faith tremendously in knowing that this was meant to be, and it has built me into a stronger, more compassionate person that is more outward-thinking about helping others and less inward-thinking about helping me. (0:04:00) That’s incredible. I can’t tell you how honored I am to be part of this panel and together with these wonderful survivors here today, because we talk about what needs to be done to change. I think it really needs to start with us, with people like us. We need to be there to speak up, and I’m honored that there are other people that are willing to do that as well. (0:04:29) There needs to be more of this though, because really we’re the ray of light to the dark world that a lot of people are facing. It’s very, very important that we continue to tell our story.
SUSAN: I felt defensive all the time. I’ve had to say, “I’ve got lung cancer, but I’m a nonsmoker.” When you’re really sick with cancer, you don’t have that much fight left in you. You’re taking everything you have and you’re trying to apply it to keeping yourself alive. (0:04:58) I could barely walk down a hallway or barely walk. I was in a wheelchair at one point. To having support, I didn’t find support early enough. What Matt’s saying is really important for people, whatever condition they’re in. Once they can be there for other people it makes a huge world of difference, because you’re fighting that stigma. I mean you’re already really sick, and then people are saying, “Well, did you smoke?” You feel like you don’t have it in you to say, “Well, I guess I deserve it.” You start to feel like you deserve it. (0:05:30) Having other people that are strong and able to support you is a really great thing. I didn’t discover it until about eight or nine months in. I didn’t have any support. So I think it’s really important what LUNGevity does of being there for people and connecting people, and people like your organization that get the message out there. Later on I discovered there were a lot of people I knew that have lung cancer, but they’re not out there in the light. They’re still sort of standing back in the shadows. (0:05:57) I’ve contacted local hospitals and asked them if there’s a support group for lung cancer patients, and they said, “We’ve never had anyone ask for a support group.” This is the large hospital up in Lansing, and I’m thinking, “There’s no one that had lung cancer treated at your hospital that wanted support?” I said, “Well, keep my number there. If anyone ever calls, maybe we could start a group.” And they said, “Well, that’s a good idea.” But there are a lot of people if you look at the numbers that have lung cancer, and they’re not out there asking for support, because in some ways they feel ashamed. I think that’s a really sad thing. (0:06:29)