by Ana Porroche Escudero
Ana Porroche Escudero PhD is an anthropologist and member of the Breast Cancer Consortium living in the U.K. She tells the story of Che, a Spanish hairdresser whose working life has been turned upside down by breast cancer.
Che represents one of the many hidden socioeconomic and other contextual aspects of breast cancer, one where certain women are not able to afford sick leave because they are their family’s main breadwinners, and because it seems as though the sword of Damocles hangs over their employment. Far more disturbing, as in the case of Che, is that the disabling sequels of cancer treatments present a grimmer fate for those who are self-employed and work in manual occupations.
I met Che when she was in her mid-forties and had owned a hair salon for over 15 years in a Spanish provincial city. She was married to a man who had been unemployed for a long time and who did not provide her with much emotional support. They had a six-year-old son together.
To help me understand Che’s experiences with cancer, she explained her complex employment and family history. Passionate about her career, she told me that she quit her job after ten years working for someone else’s hair salon to open her own with the help of a loan and a willingness to work copious hours. As is the practice for hairdressers in Spain, Che worked a minimum of 9 hours daily, not including the extra time spent on administrative matters, including tracking payments, paying taxes, contacting suppliers, and managing relations with employees and customers. Because of the hardships of starting a salon from scratch Che and her husband delayed having children. Only when her business was well established and she was able to hire two additional employees to help out did the couple decide to have a baby. It was at this point, when Che was 39 years old, that things started to go wrong.
Che loves her job and talking to her clients. For her, hairdressing is an art that gives her emotional relief and financial independence. In fact, most of Che’s clients expressed a preference for her over her employees. So when Che was pregnant she did not think maternity leave would be a good option. Without her there to serve her clients, it could negatively impact her business.
To support his wife’s work, Che’s husband opted to take paternity leave. He was fired for no apparent reason before the leave began. Che believes that although it was his right to do so, her husband was dismissed unfairly simply because he took the leave. Following his dismissal, Che’s husband suffered from depression, making it more difficult for him to secure any sort of employment. Things got worse after Che was diagnosed with breast cancer.
Che knew for over 12 years that she had a small lump in her breast but was assured during regular checkups that she had no serious condition. Two years prior to our interview, Che noticed that this lump was bigger, “more static” and uncomfortable. The ultrasound and cytology tests found no abnormality, so her gynecologist suggested that she schedule regular appointments every six months. Increasingly concerned about her diagnosis and a now painful lump, Che booked an appointment for a breast screening after receiving an invitation from the Spanish Association against Cancer – endorsed by the Spanish Ministry of Health. At the appointment, two lumps were detected: a small mobile lump she’d had for two years which was not cancerous, and the ever growing one that was.
The negative impacts of being diagnosed with cancer, having treatment, and getting sick were many, and immediately tangible for Che. First, she knew all too well that with every day she missed work, she would lose clients; her less experienced employees did not perform at the same level. When I asked Che about her regulars, she answered straight away, “Today, not even your husband is loyal.” Second, without clients, there would be no income to pay for food, bills, taxes, or employees’ salaries.
When I met Che, she’d had one chemotherapy cycle only. She could not receive the second round because her immune defenses were too low. Che told me that she did not dread the cancer itself, but the treatments and how they would affect her body, her mind, and her ability to work again. She said to me:
“I am so afraid of the treatment because I don’t know how much it will deteriorate my immune system. But I don’t have any option. I can’t forget about my business even though I want to. No matter how many times the psychologist tells me to forget about it, it is still my problem. If they told me that I would be going to earn monthly the same amount I used to earn as a hairdresser I would be relieved from many problems.”
At the time of our interviews, self-employed workers in Spain did not have the right to claim unemployment benefits. Until recently, they did not have rights to sickness benefits from the state either, which is nonetheless, very modest and worsening with draconian fiscal cutbacks imposed by a conservative government. As Che says:
“They don’t give a damn if you have to close your business. Because if you are the owner and you are sick, it is your problem… It makes everything difficult and doesn’t allow you to be ill.”
Given the insufficient safety net that Spain’s social care system provides for its self-employed people, many pay for additional private health insurance. Too often such insurance companies deny compensation claims, arguing that diseases such as cancer were not covered by the contract. Che recalled such an interaction with her private insurance company some weeks before our interview:
“As I am self-employed, I want to receive my sick benefits from the first day I am ill. Thus I have a private insurance. I found out that they will pay me at the end of the treatment because it is going to be a long sick leave. I asked them ‘Don’t I have to eat every day? Do you think the money comes from heaven?’ I wrote them a letter asking if I could have an advance. I see myself… I see myself thrown away like a cigarette butt (colilla).”
After this exchange, Che’s world fell apart. She worked extremely hard to keep her business afloat. She managed to meet the Inland Revenue’s harsh requirements and private insurance payments. She sacrificed her dreams of having a large family, even her relationship. Having gone through all of this, Che thought she deserved “the right to be ill.” Movingly, she said:
“If they said, ‘Dear patient, we are going to give what you have earned. Because you deserve it, because you have been paying taxes all of these years. So we believe you deserve it for a year.’ Because I do believe I deserve it. I’ve been working for 15 years self-employed and I always paid my taxes. I never withheld anything. Even during regular inspections they could never find anything wrong because everything was legal.”
Che’s relationship with her husband grew worse. The tension and strain of living with a man who was mentally ill, and who did not support her economically or emotionally, was combined with the constant worry of not being able to afford time to be sick and recover from her illness:
“He complains that I have many visitors at home, [and this] is disrupting his life, of course. He also accuses me of not doing anything at home. But this time I really need someone to take care of me. I decided I had to move to my parents’ and that he would take care of our son. I have much bigger problems than the illness itself, so at least in what concerns the house I can be relaxed. I can guarantee you that I won’t have been able to come to this interview otherwise.”
In addition to constant worries, Che felt the burden of being the only breadwinner and guilt about “leaving” her son with her husband and in-laws. Her concerns reflect the complicated web of gendered values that make living with cancer even more difficult. These, in turn, can worsen a patient’s mental and physical health, as is apparent when Che justifies her decisions.
“If I die my son will lose his mother… [This situation] corrodes me tremendously, bitterly and viscerally…. How can a balance exist if the strong person in the couple gets sick now?”
Che started with very little, but she managed to excel in her career even when it interfered with her aspirations to have a larger family. She bought a house and paid off the loan for her business. She prepared “for the future.” She saved money and paid for additional private health insurance. But although Che might be able to recover from cancer, the scenario for her future is a frightening one. At age 45, she is a sole breadwinner, with a child, a husband who is mentally ill, and a meagre allowance for sick leave, possibly none at all. Her occupation is not one that tolerates the implications and side effects resulting from armpit surgery, making it unlikely that she will be able to work in the only job for which she is qualified, a situation exacerbated by the difficulty of finding work given her age and disability.
For people like Che, fortunes can easily take a downward turn with a cancer diagnosis. Her case illustrates well how dealing with cancer involves much more than eliminating cancer cells from the body. The social circumstances in which women live can be as scary as the treatments they endure.
“Demystifying Breast Cancer” is formatted as a PDF for you to print easily and share. Click here to download.
“Che” was translated into Italian by Daniela Fregosi, a self-employed business consultant who became a blogger in 2013 after being diagnosed with breast cancer. She is committed to improving the rights and protection of self-employed workers who become seriously ill and shares the Italian version on her blog.
