In less than a year, Pip Lewis went from being fit and healthy to “in so much pain that I couldn’t literally hold a cup of tea”.
The Rotorua mother says she fought for five years to get a diagnosis of Ehlers-Danlos Syndrome (EDS) – a “rare” genetic connective tissue disorder that leaves her in pain “every day”.
The 55-year-old has described her “battle” with the health system after presenting with symptoms about 50 times and twice being misdiagnosed.
“Pretty much everyone said, ‘We can’t find anything wrong with you’.”
Te Whatu Ora says it regrets when patients experience “distressing” delays in diagnosis but it is “normal practice” to consider common conditions before those less common - such as EDS.
A Herald investigation in 2018 revealed four women’s difficulties having their EDS diagnosed.
Three of them- Georgie Ferris, Dr Rachel Palmer and Stephanie Aston - died last year and had struggled to get their illness recognised.
Eleven years after her diagnosis, Lewis welcomes the Rotorua Daily Post into her living room, which is filled with her paintings.
Listening to her talk and watching her cuddle her dogs and paint, it is impossible to tell she is living with a debilitating, incurable condition.
Lewis said her “horrendous” symptoms started in 2013 – the first being fatigue and hip pain.
Then living in Auckland, the Customs officer had applied for a specialised surveillance team and was training for a physical assessment.
“I just wasn’t recovering and I couldn’t run as far,” the formerly avid runner said.
Lewis, who now lives with her husband and mother in Rotorua, said her “pretty rapid” decline happened in less than a year.
“I went from being extremely fit and well to being in so much pain that I couldn’t literally hold a cup of tea or walk the couple of hundred metres to work any more.
“One morning I woke up and I was in so much pain I couldn’t lift the sheet off myself to get out of bed. That’s when I knew there was something really, really wrong.”
Lewis explained the condition meant the connective tissues around her joints became “lax” and could not contract. Her muscles worked “overtime” to support her joints.
“It’s like a constant rollercoaster of pain and fatigue … I actually don’t know what it’s like any more to be without pain,” said Lewis, who manages it with painkillers.
“On a good day, I can get through the housework. But on a bad day, I can’t do anything.”
Lewis said she was unsure of her prognosis. While there was no cure, she understood her symptoms were “accumulative”.
“The more you use your joints, the worse they will get.”
Lewis estimated she presented with EDS-related symptoms about 50 times before a rheumatologist clinically diagnosed her in 2018.
A genetic test in 2020 showed she had classical and myopathic EDS.
Lewis saw a doctor when symptoms presented in 2013.
She said that in 2014 she was misdiagnosed with arthritis and in 2019, she was misdiagnosed with fibromyalgia.
Lewis said it had been “a real battle”, with some specialists telling her she did not have EDS even after her diagnosis.
For example, she said one medical professional told her in January pain was not a symptom of EDS.
“How are these people supposed to treat me? They have no clue what they’re talking about.
Lewis participated in a recharge programme at QE Health in 2019, which inspired her to start painting and get her dogs – Ahi and Ember – for companionship.
“I learned to accept that I’m never going to get better and that I need to change my way of thinking so that I can appreciate other things in life instead of continuously living in grief and regret for what I had lost.
“I used to run and garden. Now I paint and read.”
At the end of 2022, Lewis was diagnosed with polymyalgia rheumatica and said she had been unable to work since.
“I feel like I used to be this person who was attractive and fit and useful and now I’m this person who, except to my family, [is] invisible to the world.”
Lewis, who is holding her first exhibition at the Tauranga Historical Village in June, said painting helped her come to terms with her health issues and losing her job.
In a statement, a Health New Zealand Te Whatu Ora spokesperson said EDS was a rare, life-long condition. The severity and complexity varied between people and problems could accumulate over time.
The spokesperson said diagnosis could only be made after criteria were met, and it sought to deliver evidence-based assessment and treatment aligned with the best evidence.
“As with any evolving medical condition, diagnosis can be very difficult. As new symptoms gradually emerge over time, different conditions need to be considered.
“It is normal practice to consider common conditions before those that are less common.
“We regret where patients have a delay in diagnosis and acknowledge how distressing this would be. However, the nature of health conditions means that this will occur at times, especially with rare, complex conditions.”
Patients concerned about their access to care were encouraged to liaise with their primary care team or revisit specialist teams.
“We recognise that sometimes accessing all the multidisciplinary components of care in our current health system can be a challenge for patients.”
Source: Ehlers-Danlos Syndromes New Zealand
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.