Women infected with hepatitis C as a result of the contaminated blood scandal say their medical problems were dismissed by doctors as related to motherhood, menopause or teenage mood swings.
Three women who spoke to the Guardian said they struggled to get doctors to take them seriously or test them for hepatitis C, and suffered unexplained health problems for decades while the virus, known as the “silent killer “, damage to their bodies.
They are among the estimated more than 30,000 people exposed to hepatitis C from blood transfusions given in the 1970s, 80s and 90s who are seeking justice and compensation through a public inquiry that will publish its final report on May 20.
Among them is Janice Whitehorn (45), who was infected with hepatitis C as a baby after her mother received a transfusion with infected blood in 1973.
“During my childhood and when I reached my teenage years, I felt very tired, which I now know is chronic fatigue – you feel like you’re dead, out of your body and you can’t move.
“I went to the doctors and said, ‘I have leg pains,’ and they dismissed me as a teenager,” she said.
Over the years she attended her local clinic for pains, malaise, hair loss and facial swelling. She felt as if she had been told by mostly male doctors, “You’re overweight, go away.”
When her mother learned she had hepatitis C in 1991, she asked that Whitehorn be tested, but the request was fought off with instructions to lose weight.
NHS documents since exposed by the BBC shows that officials have slowed detection rates and tried to keep public awareness of the virus low.
It wasn’t until Whitehorn was trying to start a family in her 30s that she was finally tested for hepatitis C — and found out in 2016 that she’d been carrying it for more than three decades.
Even then, she found the attitudes of clinicians judgmental because “they assume that everyone with hep C is a drug user or an alcoholic”. She was initially told that she would not receive treatment until she had liver cancer, as if it was her fault that she was unwell.
After pushing for treatment, she asked if it might affect her fertility, and was told it wouldn’t. But the Pegasys interferon treatment sent her into early menopause – something she has since learned through cancer research is a known side effect.
Joy (64) from Somerset also made regular visits to her GP from her mid-20s to find out why she had become so tired and sensitive to certain types of food and drink.
Although her liver was identified as not functioning at the optimum level, a hepatitis C test was never suggested.
She was told to control her diet – which was healthy – and exercise more, although she went to the gym four times a week.
By the early 2000s, she had become so tired that she cut back on work. “My doctor said: ‘You are tired, you have children.’ I was getting ripped off all the time. It was a male GP. I got fed up with him and asked to change doctors. I went to a woman and she said, ‘You are in the early stages of the change [menopause].” But a test came back negative.
Joy felt that the attitude was, “Oh no, not again, here she comes,” and that her problems were all in her head.
When she gave blood in 2007, she received a letter saying she had been exposed to hepatitis C during a transfusion she received at age 19. “It was the biggest shock. I cried for three days, thinking it was my death sentence. But of course it explained everything I was going through.
“They should have tested for hep C – the health service sent messages to all these doctors, surgeries and told them what it was about and to test for it,” she said.
Jenny Cooper (65) from Kent received a blood transfusion in 1987 during an operation to remove a kidney. Years later, she developed a nuclear tumor located near her liver.
Her scar after surgery to remove it did not heal, leading doctors to give her a full medical clearance in 2019. That’s when she received the call: she had hepatitis C.
It explained the decades of struggling with inexplicable fatigue, only to be told it was “because I was a single mother and in the police”. Since she was not in the risk category for hepatitis C, she was never tested.
If tests had been rolled out more widely when the contaminated blood scandal came to light, she could have been diagnosed in 1990.
“I’ve been sick for 34 years and I don’t know why,” she said. “It was terrible. It totally destroyed my life.
“I very rarely visited my GP because I felt: how can I go to him and say I feel tired, or I feel stuffy or I itch?”
Cooper was made to feel that “you’re just making a fuss about nothing”. Until one day a female nurse put down her pen and bid her time. “I told her afterwards that this is the first time anyone has listened to me since it started. She was incredible.”
