Invisible disability’s heavy toll: ‘It’s hard to overcome years of being called a liar’

Monday, 30 December 2024

Amy Clements was a child when it was first suggested she was faking her pain. Trying to convince doctors to believe her is the story of her life.

Women with “invisible disabilities” can face an uphill battle to be acknowledged and treated. Mildred Armah speaks to two women living with chronic pain and their fight to be believed.

As the roar of the ocean builds, waves crashing on the shore, a blurry figure sharpens into focus to reveal a young woman slowly walking toward the camera.

She looks straight into the lens and says: “If I told you I was in severe widespread chronic pain right now, would you believe me?

Are you living with an invisible disability? Email mildred.armah@stuff.co.nz

“Unfortunately, not everybody does.”

Amy Clements, 24, has suffered from chronic pain her whole life.

That young woman is Amy Clements in a documentary released in 2021 in which she recounts how she has been suffering multiple forms of chronic pain since she was an infant, and has been accused by medical professionals of faking her symptoms.

“I was about 3 years old when I was first accused of faking pain,” Clements says.

She said the health issues began “as soon as I was born”, with constant stomach pain due to infantile gastroesophageal reflux disease.

Her mother, Kathleen Clements, explains in the documentary that Amy was clumsy as a child, and would often fall over. She had difficulty sitting upright and had multiple ACC claims before she was a preschooler.

When Clements was 3, a doctor implied she and her mother were lying about how much pain she was in.

When she was 3, Amy was taken to an Auckland doctor following an injury at preschool.

“The doctor assessed her wrist and said it shouldn't hurt as much as Amy was claiming it was,” her mother said.

Clements said the doctor went on to imply that she and her mother were lying about how much pain she was in.

It was the first time Clements was accused of lying. It wouldn’t be the last.

Speaking to Stuff, the 24-year-old said: “As I grew up, my pain slowly became much more frequent, and it always seemed I was nursing pain from a recent injury. My first actual memory of being accused of faking my chronic pain is when I was 7.

“I started complaining of pain in my hip. During a check-up at another hospital, I told the paediatrician about the pain I was experiencing. The paediatrician said I wasn't actually in pain at all, and was just jealous and attention-seeking because of my soon-to-be-born baby brother, Nathan.

From a young age, Clements has been accused of lying about the severity of her pain, she says, with doctors suggesting she was not in pain at all but was instead jealous of her baby brother.

“I was so excited to have a baby brother, and we've always been close, so that was far from the truth. I made it back to the car before I started crying because the specialist just did not believe me.”

By the age of 9, Clements said she was on crutches most of the time, struggling to function because of the constant back and hip pain.

“This pain was severely impacting my sleep, my mood and my ability to participate in sports,” she said.

“My trust in medical professionals was also dwindling and I no longer felt safe around the people who were supposed to be helping me. I became so hurt and emotionally fatigued, I stopped talking as much in medical appointments.”

Clements uses a walking cane which helps her move around while experiencing chronic pain.

Because no cause could be found for the chronic pain, Clements said the health issues were “passed off” as behavioural and she was referred to a mental health service.

“I was assessed for multiple mental health issues and was found to be mentally well. But, when they couldn’t find a mental health issue to blame my complaints of pain on, they tried to blame my parents.”

In medical notes seen by Stuff, Kathleen Clements is accused of exhibiting “medical seeking behaviour” and having “a high need to be seen and validated”. Another letter suggests she has Munchausen syndrome by proxy, now known as factitious disorder imposed on another - a mental illness and form of child abuse in which a child’s caretaker makes up fake symptoms or causes real symptoms to make it look like the child is sick.

Clements said the accusations led to her mum being investigated for child abuse, and while Kathleen Clements was eventually cleared, it meant the former home-based childcare worker could no longer work with vulnerable children or people.

Clements, now at university and working in a disability advocacy space, said she doesn’t think she’ll ever escape the disbelieving attitudes or the effect they’ve had on her.

“So we had to go through that transition of having three disabled children in a two-income household to just having one income. All Mum's achievements and study that went into building her career were just gone in an instant.

“My mum is still clearly in pain from it all… I don't think anything will ever take away what she was accused of.”

While Clements still hasn’t officially been diagnosed, some relief came at the age of 13 when a specialist told her that experiencing such intense stomach pain in the early years of her life likely primed Clements’ nervous system to develop widespread chronic pain as she grew older.

Clements said the medical system needs to change the way it treats people with invisible disabilities, especially people with chronic pain.

Clements was transferred to the adult healthcare system in the months leading up to her 16th birthday, and “things changed for the better”.

“I still had to deal with disbelief from both within and outside of the health system, but it was no longer coming from the people in charge of my primary medical care.”

The adult chronic pain team have helped her to better manage her pain, with physiotherapy and using a walking cane.

“However my first day using the walking cane at school, I walked into the school's nurses office, the nurse looked me up and down scoffed, and asked if the cane was really necessary.”

Clements, who is now at university and working in a disability advocacy space, said she doesn’t think she’ll ever escape the disbelieving attitudes or the effect they’ve had on her.

“It's hard to overcome years of being called a liar.

“The New Zealand medical system needs to change the way it treats people with invisible disabilities, especially people with chronic pain. I refuse to sit silently and watch a new generation of families be treated the way mine was.

“I refuse to be invisible any longer.”

Rochelle Radcliffe developed complex regional pain syndrome after an accident three years ago and has struggled to get help from medical professionals.

Professor Dame Helen Stokes-Lampard, Health NZ Te Whatu Ora national chief medical officer, acknowledged the healthcare system could be challenging to navigate.

“We do our best to help them through this where we can.”

She said pain management services are in place to support those with chronic pain across the motu.

Radcliffe sits down to wash the dishes in her Christchurch home.

While chronic pain is common and affects up to 20% of the NZ population, studies have found a clear gender gap when it comes to identifying and treating women’s pain compared to men’s, with women waiting on average 12 months or longer for a diagnosis.

In the UK, a survey by the Wellbeing of Women charity found that over half of female respondents felt their pain had been dismissed or ignored by a healthcare professional. Women in other parts of the world – including North America, Australia and Europe– reported similar experiences.

Rochelle Radcliffe, 52, knows first-hand what it’s like to have her pain dismissed.

Three years ago, the Christchurch woman fell down a flight of stairs and broke all the bones in her left ankle and a bone in her right foot.

Radcliffe uses a perching stool to do the dishes as the CRPS prevents her from being on her feet for long.

After a four-day wait for surgery, she woke from the operation in “extreme pain”.

“It was the middle of the night and it was just incredibly painful. I had tears streaming down my face. The night nurse took an hour to come, and then she just acted like I was being a drama queen,” Radcliffe said.

“I just had pain the whole time the cast was on and it wasn't until a little while later, the surgeon had a look at it and said it could be chronic regional pain syndrome (CRPS), and then my physiotherapist confirmed that.”

CRPS is known as the world's most painful incurable condition and is usually triggered by trauma or injury.

Despite her severe pain, Radcliffe said the surgeon told her: “‘Next time I see you, I don't want to see you in that wheelchair or with crutches or anything. I want you to walk in on your own steam.’

Chris Higgins is chief executive of Rare Disorders NZ, a support and advocacy organisation for patients and families affected by rare disorders.

“The next time I went in, I was in a wheelchair, and another doctor was standing in and said something about sending me to a pain doctor and he said: ‘You know what? There are lots of people in way more pain than you, so I'm not going to refer you.’

“That's exactly what he said, as if I didn’t deserve it. As if I wasn’t in enough pain.”

It was Radliffe’s physiotherapist who connected her to a pain doctor, “and she was amazing, and really empathetic and helpful. She got me all the help I needed.”

Radcliffe, who still suffers from CRPS, uses various aids such as a mobility walker as its difficult for her to stand for a long time on her foot.

“I've got to be careful how far I walk. I still get pain. My foot gets hot, it swells up and I'll start getting pain up my calf as well.”

The former learning assistant said CRPS had completely changed how she lives her life.

“I was a very active person and would walk up the hills behind Christchurch, go up to the top of the Rāpaki Track and stuff like that, and it was no trouble. Now, well, I can only dream,” Radcliffe said.

The whole CRPS diagnosis experience had stuck with her, she said, and while she tries not to worry about what people think, “it's still hard because it's an invisible illness”.

Chris Higgins, chief executive of Rare Disorders NZ, a support and advocacy organisation for patients and families affected by rare disorders, said it was a “common experience” for people to endure long delays in getting an accurate diagnosis.

“The sad thing about it is, often the symptoms deteriorate over time, and if the diagnosis had been made much earlier, those people could have been supported by an appropriate treatment regime, which would have resulted in a much better quality of life.”

By and large, people with rare disorders in the New Zealand health system are invisible, he said, and “getting the runaround in the process” of being diagnosed and treated was common.

“All too often, particularly general practitioners get puzzled by what's going on, and they'll say to the person, ‘Well, I think this is all in your head and that's something you're making up.’”

He said the organisation is working with the health system to improve outcomes of people with rare disorders.

Stokes-Lampard, Te Whatu Ora national chief medical officer, said: “Rare disorders are extremely diverse and as such, we recognise the particular challenges that come with how we diagnose and treat these complex conditions.”

Stokes-Lampard said the Ministry of Health recently published the New Zealand Rare Disorders Strategy, which provides a framework and long-term priorities to guide health entities.

“Health NZ is looking forward to contributing to the strategy’s implementation over time. We are committed to better supporting people and their whānau living with rare disorders,” she said.

There may be as many as 300,000 New Zealanders living with a rare disorder, according to Te Whatu Ora.

Mildred Armah is a Stuff Pou Tiaki reporter of Ghanaian descent living with sickle cell disease - a rare disorder in which red blood cells contort into a sickle shape and can block blood flow, causing severe pain.