Sally is a divorced mother of three children (two living at home) and was diagnosed with Stage 1b breast cancer about two years ago. She lives in a small Midwestern town and works as a custodian in a local middle school. While she was not happy about having breast cancer, she immediately embraced the pink ribbon with enthusiasm.
When I asked her why, she replied, “I spent my life being on the outside. I never really belonged anywhere. I had a difficult childhood, made some bad choices and rushed into a bad marriage right after high school. I had my first child when I was young and I never really knew what I was doing. Every day seemed like a struggle and the days became years to where I am now. I thought that breast cancer was the great equalizer. That it didn’t matter that I was poor and divorced … that women who were rich and happily married were in the same boat as me. That we were all the same when it came to this disease. In spite of it being a disease, I felt like I finally belonged somewhere.”
For some reason, it took three months for Sally to receive a treatment plan for her cancer. When I questioned her about this, she couldn’t really explain why. She talked about how she had a hard time receiving information from her medical team. Sally seemed to have trouble understanding the basics of breast cancer itself. I suspect there were some insurance issues involved as well.
During those three months, Sally opened a fund-raising page for herself. As an hourly worker, she knew that if she lost any time working, she would lose income. However, because there was no treatment plan, people accused Sally of fraud and had her page shut down. Sally threatened to shave her head in order to add credence to her story.
“I contacted Komen and they had nothing for me. I was working and not in treatment, therefore, I was not in need of any help. I tried to explain that I was concerned about when I was in treatment that I would no longer be able to work and I was told that I needed to wait and see if that would happen. I worried about being able to pay my rent and about being able to feed my teen boys. I also contacted The Pink Fund and was told I didn’t qualify with them, either.
“I don’t really understand. I’ve seen those pink ribbons for years, never really knowing much about breast cancer. Now that I’m a part of ‘the club,’ I’m finding that I still don’t know much. No one helped me. I did end up getting sick and I had to go to the emergency room once. I ended up dropping to part time until the end of chemo.
"I had friends post on social media that I was brave and strong. I didn’t feel brave or strong. I was the same person I was before I got cancer and no one called me brave or strong then.
“I still don’t feel like I belong. In fact, I feel more isolated than ever. Being accused of fraud really hurt me. Being rejected for financial aid simply because I hadn’t started treatments yet also hurt. Fortunately, my ex-husband stepped in to help out with the boys. No matter what differences he and I have had, he has always been a great dad and I’m grateful for that.
“Someone told me I should have reapplied for financial aid once treatments began. Maybe I should have. By then, I was so tired that I really couldn’t see myself past the immediate day.
“I still have the same friends I had before cancer and I have a few new friends like you, but breast cancer didn’t change my life the way the pink ribbon makes it seem like it should. My life is just as hard as it was before cancer and maybe even a bit harder. Yes, I guess I appreciate each new day, but those days remind me of how I don’t fit in. I won’t be going to Komen races because those races certainly didn’t help me when I needed it. Where does all that money go if it’s not to help people with breast cancer?”
Sally is still trying to put her life back together. She’s back working full time, but feels she is more subdued these days. She doesn’t know what comes next and like so many others who have had breast cancer in the past, lives her life one day at a time. She doesn’t feel any sense of a comradery with others with breast cancer, other than a casual, “Me, too,” and has no desire to be involved in any sense of advocacy.
“Breast cancer was a while back and I really don’t want it to be a part of my present. Maybe that makes me selfish, but I’m too busy taking care of my boys and trying to be there for them. I just don’t have the desire or energy to be there for anyone else. I was invisible before I had breast cancer. I was invisible while I had breast cancer and I’m invisible now. I’m used to being invisible. I’ll probably be invisible for the rest of my life.”
The next installment of “The Invisible Breast Cancer Patient” will address breaking through barriers that keep the community from seeing each other.