When we think of support networks, many of us think of our friends and family. Yet with a condition as complex as IBD, in which it can feel as if nobody really understands, looking outside our circle of close relationships can be really beneficial. There’s all sorts of support networks out there which can be extremely invaluable in helping you through your life with IBD- that can offer anything from financial aid to simply a place to vent. Checkout my top 8 support networks.
1. It’s good to talk: Crohns & Colitis UK Support Line. CCUK are obviously the biggest and most well-known charity for those with Crohns disease and Ulcerative Colitis. Their listening support line- open Monday to Friday 1:00pm-3:30pm and 6:30pm-9:00pm. The main idea behind this helpline is to provide a friendly understanding ear where you can call and talk to somebody about your issues. The idea is not to offer medical advice but just to let people know there is somebody at the end of a phone who can understand what they are going through.
2.Help with Money Worries: Crohns & Colitis UK can also offer you financial support. They run a personal grant scheme and can support those in financial hardship. They can support you with lots of different things such as providing you with funding for a specific item that you need to manage your condition.
3.Buddy Up Another charity offering a lot of support for dealing with Crohns disease is For Crohns. For Crohns is a much smaller charity but they are doing lots of work to support sufferers and also to research a variety of things surrounding the disease. One great feature of their support is their buddy system. Their buddy system pairs sufferers together and you can also specify things like gender and location should you have any preference about your buddy. Once paired up with another patient you will be able to communicate with them via email. This is a great way to contact people if you are confident with social media and do not feel comfortable discussing your problems with everybody online. The pen pal buddy system is really effective and gives people the chance to share their issues.
4. Join Facebook.There are fantastic facebook forums out there for those looking to connect online. Here’s some of the most popular:
- “Get Your Belly Out”: an organisation that raises money for Crohns & Colitis UK but also holds lots of meet ups throughout the year such as a Get Your Belly Out Ball and different regional meetings to allow people to meet up in person and chat about their lives with IBD.
- The CCUK Facebook group.
- IBD Superheroes
- Finally, I run a facebook group called “Healthy Living with IBD” which offers a chance to talk to other people about things such as diet, stress relief and generally coping with IBD whilst trying to lead a balanced lifestyle.
5.Need support and guidance on travelling with IBD? Head to IBD Passport: a one stop website for everything to do with travel. From the vaccinations you will need, to coping with eating out in a foreign country. It is such a great resource to show people it is perfectly possible to travel and feel well with IBD (see all my travelling with IBD posts here)
6. Read blogs from fellow IBDers. As well as my own IBD blog, there’s lots of others blogging about living with IBD. I love Guts and Glory and So Bad Ass Who knows? Perhaps they’ll inspire you to write a blog of your own.
8. Make your voice heard. Sign petitions and use your own social media sites to spread the word. Thunderclap campaigns are a great way to get involved with awareness. For example, on world IBD a Thunderclap project called #flywithIBD is taking place; to encourage airlines to have greater awareness of those with IBD and make helpful adaptations like priority seating and clearly labelled food packaging. Sign up here to share the message.
These are just 8 ways to find support with IBD; if you know of any more- please share below. Remember you can catch up with all my IBD posts on my IBD page or sign up to my newsletter to get weekly updates and 2 free IBD E-books.