Who is Rashida?
Rashida lives with her husband and two children Melbourne, Australia. She previously worked in healthcare but was not working at the time of her interview. She describes her ethnic background as ‘Egyptian’: like both of her parents, Rashida was born in Egypt. As, interferon-based medications were the only available treatment when Rashida was diagnosed, she decided not to access treatment due to their common side effects.
In 1994, when she was still living in Egypt, Rashida was diagnosed with hepatitis C. While she is unsure how she acquired it, she thinks it may have been through a medical procedure. Concerned about possible side effects, she didn’t have treatment for the disease. In about 2013, she decided to get tested again for hepatitis C and found out she had spontaneously cleared it. Wanting to be sure, she tested a further time just after immigrating to Australia in 2015 and was still clear. Rashida believes while people affected by hepatitis C should ‘go to the doctor’, they shouldn’t ‘panic’.
She went ahead with the test and received a positive diagnosis. While she’s unsure how she acquired it, she thinks it might have been during a dental procedure. She remembers that, on receiving the diagnosis, she became intent on avoiding a ‘big drama’, especially because she hadn’t experienced many other symptoms: ‘Maybe this is my nature, I don’t know, but again maybe because it was not symptomatic [I thought] it was not something major to worry about.’ However, she was asked to stop work and rest at home for about three months. This meant that she also had to postpone her wedding.
Since the beach trip Rashida hadn’t experienced any other symptoms, so she decided against treatment. She was also concerned about the side effects of the interferon-based medications used at the time. As she explains, ‘I read about it giving you depression. I think I remember loss of hair, I remember [it potentially] affecting my blood pressure. When I read about the side effects, I said, “No, I don’t need to do this, you know, not voluntarily. No, I will not do it.”’
In about 2013 she decided to have another test. This time she was informed that she had spontaneously cleared the virus and the doctor advised that she should ‘please close this file and forget about it’, news Rashida remembers being ‘happy to hear’.
A couple of years after finding out she had cleared hepatitis C, Rashida and her family immigrated to Australia and settled in Melbourne. On arriving, she remembers telling a GP about her hepatitis C and doing a series of tests. These tests indicated that she was still clear: ‘The results showed nothing, even the blood – the liver enzymes – was normal and this is very, you know, something to be happy [about]’.
Reflecting on her experiences, Rashida says that while people affected by hepatitis C should ‘go to the doctor’, she also feels ‘obliged to [advise] people not panic [about] such a disease’.
Rashida’s (F, 52, no treatment experience, experience with spontaneous clearance) husband is a doctor and encouraged her to have tests after becoming concerned she may have hepatitis C.
I was going [to our summer house overseas] and when we go to the beach, I found myself feeling exhausted easily, I am not well. At that time, I had my fiancé [with me] – my husband [now], but he was my fiancé at that time – and I [was not] feeling well. [After] two days […] I […was] getting nauseated. He told me, ‘Rashida, get tested for hepatitis C’. I [asked] him, ‘Why?’ He said, ‘Please get tested for hepatitis C’, because he is a [doctor], so he knows [about hep C because] he meets a lot of patients. I don’t know why he correlated [my symptoms with hep C], but I went and did all the hepatitis […tests] and I was [hep] C positive. It was something very new at that time, and I think it was 1994 maybe, or 1995, something like that.
Rashida (F, 52, no treatment experience, experience with spontaneous clearance) explains that following her diagnosis, doctors advised her to stay home with her condition. They also discussed the chance of her children acquiring hepatitis C, but she wasn’t convinced that her hepatitis C posed a significant risk to her children.
When my doctors [found out] that I have this virus, they […advised that I should stay home and rest for a while, which meant that] my wedding was postponed. They [also] start[ed] talking about the possibility of [me] transferring the disease to my kids. I don’t know why [but] I was not convinced [by] any of this.
When people approach Rashida (F, 52, no treatment experience, experience with spontaneous clearance) for advice about hepatitis C and treatment, she recommends they seek a medical opinion, but also advises them not to panic.
I am obliged to let people [know] not to panic [about having] such a disease, because I saw that in my country […many people] were really panicked, even my relatives […] I feel that getting panicked more than normal [can negatively] affect the outcome of the treatment or the disease. Maybe it’s my nature that I don’t overreact […] When I was diagnosed, all of the community around me were doctors and they were just worried about [me] taking rest, [saying,] ‘Don’t exhaust your liver’ [and so on…] But as I told you, [sometimes people I know who…] have hepatitis C, they call me to say, ‘Rashida, you had this experience. What should I do?’ And, of course, I am always telling them, ‘Go to the doctor, but please don’t panic.’ This is always my advice.