Living with Lupus: Personal Stories and Advocacy

When Juliet Saffrey from London was diagnosed with lupus at 24, she was in the prime of her life. Life had been carefree, with frequent travel and new adventures. However, her diagnosis marked a turning point.

“When I received my diagnosis in 2000, up until that point I felt invincible,” Saffrey, now 49, recalls. “I was travelling two or three times a year, I had bought a new car. I was just having the time of my life in my early 20s.”

Saffrey’s journey with lupus began with extreme fatigue, joint pains, headaches, and mouth ulcers. Her GP promptly suspected lupus, leading to a quick diagnosis. “Having been diagnosed, I remember thinking: how is this going to change my life? I was in shock, thinking one minute I’m invisible and the next minute I’m not. I now have this illness, this shadow over me.”

Saffrey attempted to maintain her lifestyle but a severe flare-up struck at 28. She experienced debilitating pain, brain fog, and a rash. In the hospital, she learned lupus had affected her brain, leading to memory loss, weight loss, and hair fall. University College Hospital (UCH) in London provided care that slowly helped her recover.

Since her recovery, Saffrey faces ongoing challenges. “Living with lupus has been a constant challenge. I’ve had to adjust my work life, accept my limitations, and face the emotional toll of living with a chronic illness. I’ve also developed osteoporosis, type 2 diabetes, heart disease, and night blindness, all side effects of my condition and its treatments. But despite everything, I’m endlessly grateful for the specialists at UCH who have been by my side every step of the way.”

Her husband has been another pillar of support. “He’s shown me unwavering love and strength, and I couldn’t have done this without him. Our daughters have had to grow up quickly and become self-sufficient, perhaps sooner than I would have liked, but their resilience has been remarkable.”

The Fight for Diagnosis: Carol Ricketts’ Experience

Carol Ricketts, 60, from London, faced a different journey. Diagnosed with lupus in 1995, Ricketts encountered skepticism from a doctor who attributed her symptoms to aging. “When I expressed my concerns of my health to one doctor, and that I believed there was something going on with me but I wasn’t sure what it was, he said to me, ‘What is it with you women, when you turn 30 you start falling apart,'” Ricketts says. “I was really angry when he said that.”

Ricketts eventually received her diagnosis but complications in 1999 led to a blood clot in her left leg, developing antiphospholipid syndrome, and the inability to continue working. “It has been a difficult journey, and I have been unable to work for the past 25 years.”

Treatment challenges included allergies to some medications. Ricketts emphasizes the need for increased awareness and research into lupus treatments. “Unfortunately, there aren’t many medications out there for lupus, and for some of the medications which are out there, a lot of us can’t take them because of possibly having an allergy to them. Some people understand what lupus is, but lots of other people will stare at you blankly because they don’t know about the condition or it is not of interest. But it definitely needs to be exposed a bit more.”

Amaka Ejibe’s Early Onset Lupus

Amaka Ejibe, 42, from south London, was diagnosed around her 18th birthday. “I was blissfully unaware of the impact my diagnosis would have on my life. I hadn’t heard of lupus, and at a GP level back then, they were very naive to lupus as a potential diagnosis and as a condition which warranted intervention.”

Her symptoms, including severe fatigue, red eyes, and joint pains, were initially dismissed as stress due to A-level exams. The condition progressed to severe anaemia, weight loss, gastric issues, and kidney function deterioration.

“In my 20s, lupus didn’t really impact my life to the point that I needed to change anything. For example, I was working full-time. It was in my mid-30s when my condition started to really affect my day-to-day living and my lifestyle,” Ejibe says. She had periods where she was not able to work, spent time in hospital, and was on dialysis for over three years before having a kidney transplant in 2019.

“I think treatment-wise lupus is a very complex condition, and developing a treatment where you’re switching off part of an immune system is probably more complex than treating other situations. But I think it’s improving,” Ejibe notes. She attributes the lack of treatment options to the fact that nine in 10 people with lupus are women, with women’s health issues often being dismissed due to “medical misogyny.”

“I think with women’s issues, it can be dismissed because men don’t have the equivalent, so pain and fatigue can be dismissed as ‘the monthlies,’ whereas there isn’t a comparison for men,” Ejibe explains.

Advocating for Awareness and Better Treatment

The stories of Juliet Saffrey, Carol Ricketts, and Amaka Ejibe highlight the challenges of living with lupus and the need for improved awareness and treatment options. Each woman has navigated their journey with resilience, support, and a desire to advocate for change.

Medical awareness and understanding of lupus are crucial in improving diagnostics and treatment outcomes. Patients like Juliet, Carol, and Amaka emphasize the importance of recognizing lupus symptoms early and providing comprehensive support to manage the condition effectively.

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