BY CATHERINE NGUYEN
Caring for a loved one can be a confusing and lonely experience. Your whole world is turned upside down and you can barely keep up with the changes. Friends and family may try to help, but it can be difficult for them to really understand what you are going through. Practically, it may also be hard to find the time to catch up with them. As such, online support can be quite helpful.
There are many online support groups available, some of which are run by official organisations:
Others may be run by volunteers or people who have been through the same situation and wish to share their experience. It is best to try a few different ones to see what suits you.
Benefits of Online Support Groups
Support groups allow you to share your experiences with people in similar situations, and can help by
- Showing that you are not alone
- Providing you with emotional and social support
- Offering advice and tips, and
- Improving motivation.
- You can stay anonymous but be able to speak openly about your concerns
- You can join in no matter where you live
- The groups are typically available 24/7
Unfortunately, my husband had a rare side effect which his doctors had never seen. In desperation, I went on the net at midnight in search of answers and stumbled across a colon cancer group made up of nearly 4,000 patients and carers from across the world. Within minutes of posting my question about my husband’s condition, I had two responses advising me that they have had the same issue and the possibilities that their doctors explored for them. I gratefully passed these on to our doctors.
This quickly became my primary support group and because it was global, I could talk to them anytime, late at night or while I was in the hospital. The group was very well moderated with a focus on support, help and advice. Negative posts were quickly removed and scammers were kicked out.
It used to make me laugh that every few days, someone would post that he or she had managed to overcome constipation to do a number two followed by a round of congratulations from others. If that is not true support, then I don’t know what is.
Not all groups are great though and so care should be taken to ensure that they are right for you. Another cancer group which I had joined, was unfortunately dominated by a mother who was determined to share everything that went wrong with her son’s treatment. While she may have meant well, her posts scared me a lot and so I had to leave the group quickly.
Managing Online Risks
Going online is not without risk. Care should be taken to protect yourself:
- Read the group rules to understand the standard of the group. Good rules typically involve no promotions, spam, bullying, profanity and treating each other with respect. No promotions, solicitation or spam.
- Listen initially to understand if the group is right for you, and see if the rules are appropriately applied. If it doesn’t feel right, consider trying a different support group.
- Beware of red flags that might indicate a problematic support group:
- Promises of a sure cure
- High fees to attend the group
- Pressure to purchase products or services
- Be wary of giving out personal information online. There is NO reason to provide your full name, date of birth or address. You should also avoid discussing your financial situation or give out detailed healthcare information.
- Finally, support groups may not be run by healthcare professionals or trained counsellors. If you receive advice about treatments or healthcare professionals, please check with a healthcare professional you trust.
If you are new to caring or would like assistance, Solaris Cancer Care encourages you to register for its free Carer’s Course on November 28 from 9.45am-4pm in its Sir Charles Gairdner centre.
Catherine has been volunteering with Peter MacCallum Cancer Centre since 2017, and joined Solaris Cancer Care as a blog writer in early August 2020. She lost both her father and her husband to cancer, and the experiences changed her life. Catherine developed a passion for researching all matters relating to cancer during her husband’s fight, and is keen to continue building on her knowledge and using it to help others.