Being diagnosed with Crohn’s or ulcerative colitis can be a life-changing, not to mention scary and sometimes isolating, experience. A chronic autoimmune condition means you need to be proactive with your health (especially your diet and stress levels) and take steps to ensure that your lifestyle supports healing and encourages periods of remission from symptoms.
In the early days of your diagnosis these changes, especially when coupled with managing any symptoms that might be present, can be overwhelming, confusing and extremely stressful. Many sufferers of IBD report feeling isolated and lonely and like they’re not in control of their body. The often-embarrassing nature of many IBD symptoms compounds this sense of isolation; many sufferers don’t feel comfortable talking about their experiences and how their illness affects their body and their frame of mind. This contributes to something of a vicious cycle – because sufferers often keep details about their symptoms and condition to themselves, there isn’t a lot of awareness of IBD in the broader community. And so, when people are first diagnosed they feel isolated and without support or understanding.
Finding a community of individuals living with similar health conditions can be extraordinarily valuable for people with chronic 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 advice about managing your condition, lifestyle changes, diet, tests and procedures can make your situation feel more manageable.
If you’re just beginning your IBD journey, or you’ve been going it solo for a while, consider reaching out for support from one of these quarters:
While these may initially feel a little strange or anonymous, many online forums have a very strong, active and connected community behind them (even if most of them don’t meet face to face). In fact, for some situations a degree of remove or anonymity can provide an extra element of security – you might feel more comfortable going into the ‘gory’ details or asking trickier questions without the pressure of being face to face and reading body language.
Online forums are also a great source of community for those living in rural and remote areas 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, areas 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 cathartic for some people. Support groups do exactly as their name describes – offer support to people. This means that while seeking support from the group you’ll also be providing it to group members as well. Support groups can be great hubs for sharing knowledge and discussing anxiety in a trusting, safe environment without fear of stigma. To find a support group near you try asking your doctor or contacting Crohn’s and Colitis Australia.
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 acting as a knowledge hub for patients and their families. These can be excellent starting points when trying to develop or reach out to community, they can assist by referring you to a local support group as well as providing you with expert information and answers to FAQs for your disease and other useful resources. They also have events and fundraising activities, which may provide 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 contexts families and carers can feel comfortable asking some of the hard questions, sharing their trials and 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 also how their child will adjust to the lifestyle changes required to manage their condition.
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 – you just have to know where to look.