“Patients who have a good social support system tend to have better outcomes.” – Elizabeth Gage-Bouchard
Clinic appointments, long hospital stays, isolation precautions, food restrictions, exhaustion and other side effects… all the result of undergoing treatment for the insidious disease called cancer. Each of these on their own make seeing friends, participating in social activities, attending events, going to work, and even just mixing with other adults almost impossible. And then all you’re left with sometimes is a life split between home and hospital – where it’s very hard to find people going through similar experiences, and have a stimulating, uplifting conversation, and can feel so lonely. This isolation can sometimes lead to worry, sadness, shame, fear and distress.
Even if you still mix with people outside the ‘cancer sphere’, oftentimes, it’s hard to convey the emotions wrapped up in receiving such a life-changing diagnosis and such dreadful treatment – people can seem dismissive, lack empathy and understanding, be patronising and show intolerance.
However, studies show that peer support has a positive impact on quality of life and emotional wellbeing. In fact, we’re still learning how much positive impact connectedness can have on our health – both the giving and receiving of support. A 2006 study showed that women with breast cancer who had social support had a lower risk of dying from that cancer.
Peer support groups are defined by two or more people who meet up somewhat regularly – either face-to-face, phone or online – to share experiences and spend time in conversation. Support groups often centre around some kind of shared experience or identity. They allow individuals to vent frustrations, concerns, learn about new treatments or trials, exchange information, and navigate the complex process of managing a life-altering diagnosis.
It’s like being “forced into a club that no one wants to join”.
Some of the benefits described by participants in cancer support groups have been noticing positive changes within themselves, as a result of strengthened social connections, and improved ability to cope because their experiences are normalised amongst other people undergoing similar treatment. Many have also said they feel more in control of their lives and more empowered in their interactions with health professionals and family members. All these factors contribute to reduced depression, anxiety and feelings of hopelessness.
We, at Rare Cancers Australia, are trying to provide just this for those in the cancer community who feel isolated and sidelined because of their diagnosis of a rare or less common cancer. We’ve also partnered with Carers’ Couch in order to look after the caregivers within the cancer community. We want to reach out and give you a platform to reach others, to try and assist in attaining those ‘better outcomes’ – by encouraging focused support groups that will provide comprehensive emotional, social and education support, an improved quality of life, continued support post-treatment, and support to caregivers.