
Nelli lives with chronic pain. It took her 20 years to find the right help
"There is only so much they can do for me surgically. So, I manage my pain on a day-to-day basis through a number of physical interventions, as well as medical interventions as well."
Stevenson works for a community legal service with flexible arrangements, and says she is fortunate to have access to a specialist GP and team who support her physical therapy and pain management. "However, it took me about 20 years of pushing through the medical system, constantly advocating for myself and fighting to be taken seriously, to be able to find that group of people," she said. This started in her late teens. "I was told, like most people with pelvic pain, that it's just part of being a woman, it's part of your period. I was gaslit for several years," she said. This had serious consequences. At one point, Stevenson says she had normalised the chronic abdominal pain she was experiencing that she didn't notice her appendix had ruptured. "I didn't present to hospital until 12 days after it had happened," she said. Stevenson ended up in ICU and needed two major surgeries to save her life. She says these caused significant scar tissue, which added to her chronic pain.
She said she has heard many stories of late diagnosis, misdiagnosis and gaslighting from the chronic pain community.
"They [medical professionals] aren't taking seriously these people who are saying, 'I cannot live like this anymore. I need more help.'" Chronic pain is taking longer to diagnose in 2025, according to a new report from peak consumer body Chronic Pain Australia .
The 11th edition of its National Pain Survey, released on Monday to kick off a week-long awareness campaign, has revealed what it calls a "devastating national crisis" marked by diagnosis delays and a severe mental health toll.
Waiting for a diagnosis Chronic pain is a common and complex condition characterised by persistent pain experienced on most days of the week, according to the Australian Institute of Health and Welfare. Approximately one in five Australians, or 3.6 million, live with chronic pain. However, Chronic Pain Australia believes the figure is higher. "That figure came from a study that was done about 15 years ago," Chronic Pain Australia chair Nicolette Ellis said.
"What we're predicting chronic pain is sitting at in [terms of] prevalence is about four million Australians in this day and age, and [this is] projected to go up to five million in 2050."
Of the almost 5,000 survey respondents, many had multiple conditions, including pain, joint pain and nerve pain, often experienced at the same time.
Over half (54 per cent) of respondents reported waiting more than two years for a diagnosis, and 44 per cent waited over three years. This has increased from 42 per cent waiting over three years in 2024, and 41 per cent in 2023.
Mental health impacts — and a 'pervasive' stigma Ellis said delayed diagnoses can contribute to the "vicious cycle" of chronic pain, including mental ill health. "For a lot of people, it takes away their identity, increases their mental health issues … and that's because of [what] pain can take away," she said. "If you're waiting for a diagnosis, typically you lose function. That might be reduced hours at work, or it might be leaving the workforce altogether."
The report revealed 74 per cent of respondents had experienced mental health impacts, with 87 per cent experiencing sleep disturbances.
Among other impacts was 63 and 59 per cent of respondents who experienced strain on family relationships and friendships. Stigma around chronic pain is "pervasive", according to the report, which found 74 per cent reported feeling ignored or dismissed. Ellis said this can come from health professionals along with friends, family, and community members. However, reported stigma from health professionals was higher than overall levels.
"Many people feel gaslit or stigmatised by health professionals — that this is all in their head and it's not a true condition," she said.
Calls for more complex care Despite the complex nature of chronic pain, the report found access to appropriate multidisciplinary and specialist care is falling short. Only 18 per cent of respondents received a referral to multidisciplinary pain management, and 30 per cent of those referred never secured an appointment. Ellis said access to multidisciplinary care is limited and dependent on location. "If you're in a metropolitan area, usually you can get into a tertiary or hospital-based pain clinic. But they have massive wait lists," she said.
"Access to that kind of care is very limited."
Chronic Pain Australia has been advocating for integrating multidisciplinary care programs into primary care settings. Ultimately, it wants to see chronic pain recognised as a condition in its own right — and made a national health priority. "Currently, we don't recognise pain as a condition in its own right; we recognise it as a symptom. What that means is that not only is chronic pain invisible to society, it's invisible in our health system data and in our policies," Ellis said. Ellis said recognising chronic pain in its own right would increase awareness of the condition, to guide adequate funding and resources. SBS News has contacted the federal health department for comment. It's understood the latest report will be presented to parliament later this week. For Stevenson, having access to early diagnosis and complex care can make an "extraordinary difference". "It means that someone who may otherwise be bedridden for weeks and weeks on end can actually participate in society, can maintain a healthy work-life balance, and can go about their days as a person living as pain free as possible, which surely we all deserve."
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SBS Australia
7 hours ago
- SBS Australia
With growing fears of 'mass starvation' in Gaza, why hasn't a famine been declared?
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"Mothers are telling us that they are often forced to choose which child to feed. "We are talking about hundreds of thousands of people, especially the most vulnerable, such as children and pregnant women, at extreme risk. This must stop." Since the October 7 attack, at least 101 people, including 80 children, have died from hunger, with most fatalities occurring in the last few weeks, according to Palestinian officials. On the weekend, the United Nations (UN) World Food Programme (WFP) warned that "Gaza's hunger crisis has reached new levels of desperation". "Malnutrition is surging with 90,000 women and children in urgent need of treatment. Nearly one person in three is not eating for days," the WFP said. The reports came amid UN officials, aid groups and experts' warnings in recent months that Palestinians are on the brink of famine. How is famine declared? According to the Integrated Food Phase Security Classification (IPC), the leading global hunger monitoring body, famine is defined as "extreme food deprivation". The IPC defines five distinct phases of food security, ranging from minimal (Phase 1) to famine (Phase 5). Robyn Alders, a food security expert and honorary professor at the Australian National University (ANU), told SBS News: "This is how it's been defined in order to help international agencies make decisions about how they allocate their resources to deal with priorities." Famine, the most severe form of food insecurity, is only declared when at least two people per 10,000 die daily of starvation, 20 per cent of households face extreme food shortage, and 30 per cent of children are acutely malnourished. "Famine is basically a response to severe and widespread food shortages. It's about hunger, amount, nutrition, and characterised by death, as in a population." — Amra Lee, humanitarian practitioner and researcher at ANU. Source: AAP / Hasan Alzaanin/TASS/Sipa USA Last year, the IPC announced that a region can be deemed to be in "famine with reasonable evidence" if two out of the three criteria have been met and it is likely that the third has also been crossed. While the IPC serves as a mechanism to assess whether a famine is occurring or likely to occur, it generally does not issue official declarations. Instead, UN officials and governments usually release formal statements based on IPC analyses. Alders said the definition "is independent of the driver" of famine. "There can be natural disasters that lead to failure of food production ... Or as we know, if we read history, that food shortages have been used as weapons of war, basically over thousands of years." Last year, famine was declared in parts of North Darfur, Sudan. Previously, Somalia experienced a famine in 2011, and South Sudan faced similar crises in 2017 and 2020. Why has famine not been declared in Gaza? In war-torn Gaza, which is in a deep humanitarian crisis, famine has not been declared yet. The IPC had previously forecast that from May to September, 470,000 people in Gaza would face famine (Phase 5), one million would experience emergency food security levels (Phase 4), and the remaining 2.1 million people would be in crisis (Phase 3). Krishnan from Plan International said the lack of declaration of famine in Gaza is related to the lack of accessibility to data. "The definition of famine is based on data. The data is not available right now, but there is no conclusion that the data doesn't exist, except that we are not able to collect it," he said. "Because the absence of people who could collect primary data who are not allowed to go in [Gaza], resulting in a situation where they're not able to declare [famine]." Some experts argue that, despite a lack of data, famine already exists in Gaza. Amra Lee, a humanitarian practitioner and researcher at ANU, told SBS News: "Given the data on a hundred dying of starvation over the past or since May, we can assume, and experts have already assessed, that famine is happening in Gaza." "The problem right now in Gaza is not the declaration of famine. The problem right now in Gaza is that insufficient aid is getting into the strip [and] Israel, preventing the aid, getting into the strip," the former head of program for the WFP Pacific said. "I can see the famine risk has been there for a while, and it's important, but we need to look at what's not being done to avert the famine." Food supplies '20 minutes' away from Gaza Lee said one of the reasons behind the worsening situation for Palestinians is the Gaza Humanitarian Foundation (GHF) program , which started in May after Israel halted all aid deliveries to Gaza in early March. The GHF bypasses traditional aid channels, including the UN, which says the US-based organisation is neither impartial nor neutral. Earlier that month, Israel acknowledged "incidents in which harm to civilians who arrived at distribution facilities was reported". "As many have warned and have since been proven, this foundation did not have a humanitarian character. It is serving a political and military agenda," Lee said. "We need specialised experts who know how to do this ... [and] sort of reinforce national health systems to avert the famine that is occurring at risk of deepening. "We need to revert to principled aid delivery, the blockade needs to be lifted, and aid needs to reach the strip at the scale needed." The US-based Gaza Humanitarian Foundation, which has been disavowed by the United Nations, started delivering aid to Gaza in May following a two-month blockade by Israel. Source: AP / Abdel Kareem Hana In their joint statement, the humanitarian and aid organisations also criticised the GHF and said that "tons" of aid were in warehouses just outside Gaza, but Israel's government was restricting its entry. Krishnan told SBS News: "On the other side of Rafah and Gaza in Egypt and elsewhere, there are hundreds of trucks that are waiting with food supplies, which could get into Gaza within 20 minutes." "Hunger has always been a solvable problem ... Except [for] the complete siege that has been going on from the Israeli Defence Forces." On Wednesday, Israeli government spokesperson David Mencer rejected such claims and accused the UN and its partners of not collecting the large quantities of food and other essentials that were cleared and waiting on the Gaza side of the border, saying "aid has been flowing into Gaza". He also said there was "no famine caused by Israel" and alleged that there was a "man-made shortage engineered by Hamas", who he accused of stealing aid — a claim that the establishment of the GHF was in part based on and one Hamas has denied.

ABC News
20 hours ago
- ABC News
The 'difficult' phase of returning to life after cancer treatment
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News.com.au
20 hours ago
- News.com.au
Private healthcare giant Ramsay shuts psychology clinics
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