You’re part of an inspiring community
Being diagnosed with inflammatory bowel disease (IBD) can be a life-changing experience, not to mention scary and sometimes isolating. A life-long condition means you need to be proactive with managing your health (especially your diet and stress levels), and take steps to ensure that your lifestyle supports healing and encourages periods of remission (absence of symptoms).
Finding a community of individuals living with similar health conditions can be extraordinarily valuable for people with life-long illness. There are people out there who have gone through what you are experiencing – the fear, the pain, the discomfort and awkwardness. Furthermore, with experience comes knowledge.
Having a group or just a few experienced individuals you can turn to for support can make your situation feel more manageable.
If you’re just beginning your IBD journey, or you’ve been going through it solo for a while, consider reaching out for support.
While IBD may sometimes be referred to as an ‘invisible’ disease, there is a strong community of sufferers out there ready to share their experiences and support others.
While the anonymity may initially feel a little strange, many online forums are a great place to chat to like-minded people (even though most people don’t meet face-to-face). In fact, being anonymous has its benefits. You can chat about uncomfortable details or ask embarrassing questions without feeling judged.
Online forums are also great for people living in rural and remote communities where a face-to-face support group might not be available. There are loads of online forums out there catering to different niches (diagnoses, age groups, lifestyles, etc.) A simple Google search for your condition and “online forum” or “message board” will point you in the right direction.
Meeting face-to-face with people who share your diagnosis and symptoms can be extremely comforting for some people. Support groups do exactly as their name suggests – offer support to people. This means that while seeking support from the group, you will also be providing it to group members. Support groups can be great places for sharing knowledge and discussing anxiety in a trusting, safe environment without fear of judgement. To find a support group near you, try asking your doctor or contacting Crohn’s and Colitis Australia (1800 138 029).
Illness-specific health organisations such as Crohn’s and Colitis Australia are excellent resources for information and support. They are dedicated to raising awareness of IBD as well as fundraising, and are a knowledge hub for patients and their families. These can be excellent starting points when trying to reach out to peers.
They can assist by referring you to a local support group as well as providing you with expert information and answers to FAQs. They also have events and fundraising activities, which may give you the opportunity to mingle with other people affected by IBD.
Families and carers of those with IBD can also reach out to support groups, health organisations and online forums for knowledge and comfort. In these safe spaces, families and carers can feel comfortable asking some of the hard questions, sharing their concerns and seeking advice about supporting their loved one during flare ups.
These groups are especially useful for parents of children with IBD who often experience anxiety, frustration and fear about their child’s illness, their part in caring for their child and concerns regarding how their child will adjust to the lifestyle changes required to manage the condition.