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During the summer of 2012 Thomas, Dyar, and I had the opportunity to work with the LiveSTRONG foundation creating documentaries for their latest campaign in Mexico, “Share Your Story”. By sharing the stories of cancer survivors and spreading knowledge about options for fighting the disease through multiple media outlets, the project battled back the deadly stigma that surrounds the disease in Mexico. Here’s some pictures from our time in Mexico and an article written by Dyar Bentz.
CANCER AND THEN SOME:
Stigmas & Support Groups in Mexico
The waiting room of the Hospital Civil de Especialidades is less of a room and more so a vast outdoors concrete slab.
After an unsettling pat-down at the hospital’s outer security fortification, hospital visitors meet a sea of gloomy, sweating faces glancing up (or not) from rows and rows of long, crowded benches. The scant awning goads them with teasing shade.
But continue into the building for one of Guadalupe Sanchez’ weekly breast cancer support groups and the downcast entryway is soon forgotten. Like a blast of cool air, infectious laughter and hugs from five beaming women leave you wondering where all the patients have gone. A three-year breast cancer survivor herself, Guadalupe knows exactly the mood new cancer fighters need.
Her own experience has taught her that cancer patients in Mexico must be surrounded by hope and joy to muster the strength required to fight both the insidious disease and the stigmas that surround it in this country.
“Smiling. Being happy. Making your life happy,” she said. “Because they need to know that the best medication is being animated.”
These upbeat patients reflect the powerful healing effects of group therapy; they embrace as old friends and joke openly about the rise in membership this week–a new pair of breast implants has joined the group.
“There are people that are helping…with the help of partners, you are good. I am good,” said Guadalupe. There is no lack of help in Mexico, but, unfortunately, many never seek it. People here often associate two major stigmas with cancer, that it will kill you, and before you die, you’ll spread it to others too.
“One of the primary stigmas is that cancer equals death,” Guadalupe explained. “They are very emotional when they get cancer and they think they are going to die.”
The stigma runs deep and holds fast. Even after witnessing the three grueling, tolling years of their mother’s bout with the sickness, Guadalupe’s own sons, still, to this day, do not accept that she ever had cancer, because she’s alive now. “They believe the stigma that if you have cancer, you would die,” she said.
Stigmas can arise from any number of complex factors, but generally, the cause is simple. “We have a problem with ignorance in Mexico,” said Guadalupe, “a lack of information.” And the result? “A lack of cancer survivors sharing their story.”
“The first time I could say ‘I have cancer, but I’m in treatment. I’m fighting to save my life.’”
Survivors hold the key to battling the stigma. She continued, “If you have information, you need to share it. Share the fact that cancer does not equal death.”
Guadalupe first shared her own story at a breast cancer health meeting. “It was the first time I met other people that had cancer as well,” she said. “The first time I could say ‘I have cancer, but I’m in treatment. I’m fighting to save my life.’”
The experience inspired her to help other women come to the same realization. In the support groups with which she volunteers, “the first thing you do is share your personal life story,” she said. “What we do is understand the people. Give them strength and tell them that this disease will leave them, that they will be cured.”
When asked to describe her role in the fight against cancer, she responds “A lot of women are lost upon diagnosis, I walk them through the process. I am a navigator.”
And to many women, Guadalupe and her meetings mean even more.
“The support group is my motivation to get up in the morning,” said Maria Elena, a breast cancer patient from the slums of Guadalajara. “I go even if I’m tired.”
Maria described her immensely impoverished neighborhood, “Drunks, gangs, people killing each other, even yesterday they killed a kid.” Conditions are bad enough without the added social anxiety brought about by misconceptions of cancer.
The major lack of education combined with what Maria calls the “community’s low cultural level,” leaves a majority of her neighbors (and family) susceptible to the second deadly Mexican stigma Guadalupe mentioned: that cancer is contagious.
At the onset of her first physical signs of cancer, Maria’s life changed drastically. The terrible stigma influenced how her neighbors and family treated her.
The neighbors began a seemingly unified, perpetual drive to forcibly remove Maria from her own home, in order to stop her from spreading her disease. “They’re out there from midnight to four in the morning. It’s like they take turns all night or something,” she said. It began with simple name-calling: “cancerosa, pansona, un monton de cosas,” but soon evolved into something much worse.
Once, Maria discovered that they had broken into her home and poured pesticides into her bed. “Even when sleeping on the floor, I smell the fumes. I cover my face, breath through my mouth,” she said. After this did not scare her away, the neighbors resorted to more violent means.
One particular night, a woman in the neighborhood threw large chunks of dirt and gravel at Maria and then threatened her with scissors and broken glass. When Maria finally got the police involved, the woman hid as they arrived. Maria failed to convince the authorities to more deeply investigate the situation, which only further damaged her self-esteem.
Her own family would not help her. “They are ashamed of me for being bald and fat,” she said. So, she found a new family. She found Guadalupe.
Immediately Guadalupe’s support group set about advising her and helping her address her problems.
“These neighbors see that you’re weak,” Guadalupe tells her, “If you don’t work on your self esteem, you’ll have a higher chance of them bullying you.”
Soon the group came to know Maria well, and they began helping her identify her own strengths and how to apply them. “The key for you in moving forward is to keep making jokes about life the way you do,” they tell her, “then you can continue to live positively.”
The group has even encouraged her to confidently go to the police and press charges. She is now well on her way to getting her life back.
When Maria started the support groups, she worried that her own story was not important enough to share, that she was not worth it. The group comforted her and explained, “This is your experience and it has value. You have your own story.”
Now she believes them.