“When it comes to endometriosis, there’s a lot of people that think they understand or think it’s only a ‘small’ disease that affects you a couple of days a month,” she said.
“But day-to-day coping can actually be really difficult.”
What started out as a search for more information, led Marissa to an online support group of Australian women living with endometriosis.
Finding an online community where people understood her experience allowed Marissa to reach out and get support in a way she had not been able to before.
Even though endometriosis affects one in ten women, it has long been poorly understood, can be extremely isolating, and on average takes a woman seven to ten years to get an accurate diagnosis.
Advocates say women are often forced to become self-taught experts, managing symptoms that include pelvic pain, heavy or irregular periods, bowel and bladder symptoms, and fertility problems.
“In the group, you feel like you’re around like-minded people that understand … like there’s this big support network that’s available just at your fingertips when you might need it,” Marissa said.
Support groups on social networks
The 25-year-old Brisbane nurse is one of thousands of Australians living with an illness who turns to social media to connect with others who understand her plight.
“Closed” or “secret” Facebook groups allow people connect privately with others who might be going through a similar experience.
The groups often have a set of unique terms and conditions, and require members to answer a series of questions before joining. For example, “do they live with X illness or care for someone who does?”.
“It’s safe space where people can talk without feeling judged, and look for support and reinforcement that they are doing the right thing and doing everything they can,” Marissa said.
Dr Melanie Keep, an e-Health researcher at the University of Sydney, said recent years had seen a rise in the number of illness support groups on social media, as well as online discussion boards and patient-specific platforms.
Usually the groups are run by one or more voluntary members, or by an organisation advocating for the same cause.
Dr Keep said there was significant variety from group to group.
“There might be emotional support from peers. And there could also be practical support, like being able to drive somebody to an appointment,” she said.
“All of these things can be facilitated through an online group.”
But Dr Keep and her colleagues recently investigated the effects of online health communities on members who engage less actively, and found the experience was still largely beneficial.
“We found that even people who ‘lurk’ feel like they’re getting something out of the process, either by sharing minimally or by what they view,” she said.
Sharing resources and supporting others
Kristin Gillespie, 54, has lived with mental illness for most of her life, and now helps to run a closed Facebook group for Australians living with psycho-social disability.
Kristin said the announcement of the NDIS prompted her to connect with others who were also grappling with how the scheme would work.
“I’m very much a believer that people with disabilities need to stick together … and peer support is enormously beneficial and powerful if it’s done well,” Kristin said.
According to Kristin, the group, which now has more than one thousand members, provides peer support and practical information about mental health and the NDIS.
“We have a huge range of stuff in the group. Sometimes we might be discussing how things operate at a nuts and bolts level, or we might be discussing one person’s lived experience,” she said.
For Kristin, one of the biggest benefits of the group is that people can participate from anywhere in Australia.
“People who suffer from serious mental illness tend to be very isolated, and many of us have to live in more rural or remote locations simply because we can’t afford to live in the city,” she said.
“It enables us to connect with other peers in a fairly safe environment, and that’s actually quite hard to do.”
Minimising potential risks
In both Kristin and Marissa’s groups, administrators have posted clear guidelines around who to contact if someone needs urgent help or support.
Dr Keep said online support groups often develop group guidelines to ensure discussions are healthy and respectful. These can include:
- Who the group is for (e.g. patients, carers)
- Behavioural guidelines (being respectful of other members)
- No advertising or promotional content
- Where to access urgent help or support
Dr Keep said for people considering joining an online support group, it is important to read a group’s guidelines and note their privacy settings. Also, shop around.
“Look at a number of different communities, look at their terms of conditions and their rules of engagement,” she said.
“Does it have a good sense of community? Or are people putting each other down? Do people get positive, supportive messages when they’re responding to others and making their own posts?”
It is also important to be aware of the risks of misinformation or false advertising, especially given patient support groups on social media are rarely run by qualified medical professionals. So while they can be a good place to get support and make connections, you should seek medical advice from your doctor.
But the benefits of online support groups can be significant, Dr Keep said, especially for people not able to access support offline.
“I think the support that people receive out of these online communities outweighs the potential risks, especially when there are systems in place to try and prevent those risks,” she said.
“It’s the value of talking to someone whose been through it all before, and can make things less scary, however awful it may be,” she said.