“I want people to know that they saved my life, and they gave my son back his mother. I want other women to know that they should not feel shame because they have HIV. And to keep hoping. Even when it seems there is no hope left, a change can happen.”
-Joy, a client of Casey House
Note: Due to the privacy needs of this client, we did not produce a video for Joy. However, her story is below.
Many mothers who live with HIV face additional threats to their health because of poverty and the needs of their children. They may be very isolated and in need of help, but the stigma of the disease – particularly for their children – can make women afraid to go to their family, friends or community members for assistance.
Fear of stigma is a daily reality for Joy, whose story we told in the Casey House annual report several years ago. As we did back then, we have changed her name and some details of her story, to protect her anonymity. Her concern for the stigmatizing consequences of disclosing her identity is real, but Joy courageously wants to tell her story to raise awareness and reduce stigma for other women living with HIV.
“I want people to know what it’s like, to be told that you will die and leave your child alone in the world,” explains Joy, who is originally from East Africa. “When you feel like you have no help and nobody to even talk to… you lose hope, and your health gets worse.”
Joy has been a client of Casey House since shortly after her husband’s death, when she became very ill herself due to progressive organ disease caused by HIV. Her doctor told her she might have only six months to live. With no family in Toronto at the time, Joy frantically sought a distant relative in the United States who agreed to care for her son after her death. Still grieving the loss of her husband, Joy prepared to say goodbye to her child.
But that was ten years ago. So much has changed since then. Today her son is 17, and mother and son are both flourishing together. He will graduate from high school this year, and Joy laughs as she describes his many plans for the next stage of his life. (“I tell him he can do anything, and he says, ‘That’s the problem, Mom! It’s too hard to choose!’”)
Today, with the help of Casey House, Joy receives weekly massage therapy to help with the terrible pain of neuropathy, a common neurological complication of HIV that causes muscle weakness and pain in the extremities. She gets help with transportation so that she can get to the medical appointments she needs. Katie, a Casey House registered nurse, comes to Joy’s home regularly to check her health and ensure she stays out of crisis. Liz, her Casey House social worker, supports Joy with visits and regularly phone conversations. All this care is provided thanks to the generous support of our donors.
Joy is deeply grateful for the help. “Without Casey House, I would not be here today, feeling strong and being a good mother to my child,” she says.
“It was so hard to think I would not see my son grow up,” reflects Joy, sadness sweeping across her face. “I was praying and the doctors and the people at Casey House were asking me to fight the disease. And with their help I beat it. And today I’m getting stronger and happier. I never believed my life was going to turn out like this. I knew I wanted to see my child grow up and graduate, but I didn’t believe it would happen.”
“Saying thank you is not enough, but it’s all that I can do,” she adds. “All that I have to give back to Casey House is my thanks, and my story. I want people to know that they saved my life, and they gave my son back his mother. I want other women to know that they should not feel shame because they have HIV. And to keep hoping. Even when it seems there is no hope left, a change can happen.”