“For people who have a loved one who’s experiencing chronic pain, it’s really important to understand the full impact of what pain can do to somebody. It’s not just about the pain—it’s about what the pain takes away from their life.”—Nicolette Ellis, Vice President, Chronic Pain Australia
Key points
- Nearly half of all Australians live with a chronic health condition, with mental and behavioural conditions, back problems and arthritis the most common.
- Everyone’s experience of living with a chronic condition is different, and it can affect every aspect of someone’s wellbeing.
- Validation is key. Give your loved one space to open up about their experience, and allow them to tell you how you can best support them.
Can you imagine how it must feel to be diagnosed with a chronic health condition? Not just a health condition, which can be a big deal on its own, but a chronic health condition—which means it probably isn’t going away.
Nearly half (46.6 percent) of Australians are living with at least one chronic condition, according to the Australian Bureau of Statistics National Health Survey. The most common are mental and behavioural conditions (20.1 percent), back problems (15.7 percent) and arthritis (12.5 percent).
Given these statistics, it’s likely that someone close to you is dealing with a chronic health condition. But knowing what to say and do when someone is going through a tough time can be difficult.
An emotional rollercoaster
Understandably, living with a chronic condition can be challenging emotionally.
“Frequently we see mood changes around the time of diagnosis,” says Sally Shaw, psychologist and owner of Focussed Health Psychology, “which may settle down as people gain confidence in their ability to manage the condition.”
However, acute feelings of sadness, depression and even high levels of distress can easily resurface if the condition flares up, or a new hurdle or symptom is discovered.
“Some chronic conditions also bring with them an increased chance of mood disorders, like anxiety or depression,” explains Sally, “because the pathology of disease might alter the way that person’s brain works.”
The impact of chronic pain
Living with long-term and ongoing pain can affect every aspect of a person’s wellbeing. According to Nicolette Ellis, Vice President of Chronic Pain Australia, it can impact on someone’s physical and mental wellbeing, as well as their ability to work, socialise and “participate in the activities that bring meaning to our lives”.
“For people who have a loved one who’s experiencing chronic pain, it’s really important to understand the full impact of what pain can do to somebody. It’s not just about the pain—it’s about what the pain takes away from their life.”
Because everyone’s experience is different, it can be difficult even for trained professionals to anticipate all the ways someone might be affected.
“My wife lives with endometriosis, and even though I work in chronic pain management, it was a big learning curve to see the reality of what it’s like to live with chronic pain,” admits Nicolette.
Toxic positivity vs compassionate listening
With this in mind, how can we support a loved one with a chronic condition? The first step, Sally suggests, is to avoid toxic positivity—which is when we encourage people to be positive, to look on the bright side and to put things in perspective. The opposite of toxic positivity is compassionate listening.
“Compassionate listening means we are prepared to sit down next to someone who is having difficult time and listen to them with empathy and support,” says Sally. “And, at the same time, not to trying to fix it, or hurry them up, or be dismissive or invalidate what they’re going through.”
It’s difficult, she says, “because most of us want to help the people we love when they’re going through hard times.”
What to say—and what not to say
Our experts’ number-one tip is to offer validation. “You’d be surprised how meaningful and supportive someone with a chronic condition can find the statement: ‘Gee, that sounds really hard’,” says Sally.
After that, leave some space for the person to either change the subject or offer more detail. But validating their experience is the most important part.
“Validation reduces or down-regulates pain signals, so when people feel validated that actually reduces their pain experience,” says Nicolette.
When it comes to what not to say, both Sally and Nicolette say it’s best to avoid offering guidance. “Everyone’s got tips and tricks—but sometimes people are not open to that,” says Nicolette.
You should also “be really careful about comparing your pain experience to someone else’s—that can be a tricky space and quite invalidating,” she adds. “A common one is people comparing their headaches to someone’s migraines.”
When in doubt, ask
If you know someone living with a chronic condition, don’t be afraid to ask how they’re feeling or how they would like to be supported by you.
“Sometimes saying: ‘I don’t understand how this may be impacting you or how you’re feeling, but talk me through it so I can understand better’ is a good first step,” says Nicolette.
Disclaimer:
Information provided in this article is of a general nature. Australian Unity accepts no responsibility for the accuracy of any of the opinions, advice, representations or information contained in this publication. Readers should rely on their own advice and enquiries in making decisions affecting their own health, wellbeing or interest.
