Pain sufferers want to be heard

Rebecca McDonald is tackling life with chronic pain.

By Margaret Maccoll

Playing sport and studying long hours Sunshine Coast landscape architect Rebecca McDonald just thought her lethargy and aches were the result of overdoing it so a diagnosis of Rheumatoid Arthritis at the age of 23 was “absolutely devastating“.

Rebecca said at one point her condition was so debilitating she relied on friends to cook her meals. She had wrist braces, ergonomic chairs, was using a shower chair to wash and while living in a two-storey house, was sleeping on the couch downstairs, unable to climb the steps.

She was determined her illness wasn’t going to stop her from working or playing netball which she loves and she is now learning to manager her condition and chronic pain and work full-time.“My GP made a big difference from the beginning,“ she said. “She believed what I was going through.“ Rebecca got a medical team in place that included a rheumatologist, physiotherapist, personal trainer, a dietician who helped her with an anti-inflammatory diet and is planning to visit a pain psychologist.

The National Pain Survey 2020 results reported a worsening in relationships between people in chronic pain and their GPs and pharmacists.The annual survey conducted by Chronic Pain Australia, the grassroots voice of Australians living with chronic pain, involved 1200 people from across the country and was released to mark National Pain Week from 27 July-2 August.

When asked to rate how people felt their GP was managing their pain the average score was 5 out of 10 and when asked to rate their pharmacist’s performance managing their pain, the average was 4 out of 10. In 2019 the average response to these questions was 8 out of 10.“It easily demonstrates that health care professionals need to improve their approach towards how pain is managed in Australia and importantly, how people in pain are treated,” said Chronic Pain Australia president Jarrod McMaugh, who is also a pharmacist.

Chronic Pain Australia executive director Akii Ngo said living with chronic pain can be one of the most debilitating and hopeless things anyone can experience.

“As someone who has lived with it for as long as I can remember, sometimes so severe and so agonising that I’ve been hospitalised for weeks or months at a time, it can be extremely isolating and terrifying, especially without the support of good doctors and health professionals who understand, believe you and want to help. A dedicated doctor can truly make all the difference to your quality of life and hopes for the future,“ she said.

People in pain reported through the survey that they often felt unheard, not believed, and generally stigmatised when they visited their GP and pharmacist. Being suspected of being a drug seeker was very commonly reported and likely has contributed to the poorer relationships between people living in pain, GPs and pharmacists.

Chronic pain affects more than 3.2 million Australians of all ages and is one of the fastest growing medical conditions.Pharmacist Kate Gill has had chronic pain for the past 10 years following an appendicectomy. Every six or seven months she has a nerve near her scar cauterised which helps relieve the pain until it regrows.

Kate said having chronic pain had changed the way she interacted with her customers and she now took the time to discuss treatment options with them. “I’m less judgemental. I spend a lot more time with them,“ she said.“I think a lot of pharmacists do try their best but there’s not always that compassion there.“

She said pharmacists also have a legal obligation to ensure drugs are legitimately prescribed.Mr McMaugh said the extra pressure and challenges Covid-19 placed on health care professionals had brought positives and negatives.

“It has been difficult accessing the medical professionals they are used to seeing face-to-face, but the majority are happy with telehealth options,“ he said. It has prevented many from accessing self-management options such as hydrotherapy, massage, swimming pools and gyms but many respondents reported benefits from selling-isolation and working at home arrangements due to the respite it has given their bodies as the pace of life has slowed.

Chronic Pain Australia is encouraging all Australians to learn about pain, how to manage it, as well as better understand what it is like to live with chronic pain.

They have launched a video series called Faces of Pain, which tells the stories of everyday Australians living with chronic pain and a booklet titled ‘Understanding chronic pain’ to explain what pain is and how best to manage it.

The National Pain Survey results are available at www.nationalpainweek.org.au.

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