Getting an ulcerative colitis (UC) diagnosis can be overwhelming, scary, and for some, embarrassing. It’s important for someone who is recently diagnosed to educate themselves about the disease so they’re able to have helpful and informed conversations with their doctor.
Getting a diagnosis can feel very lonely, but you are far from alone. In fact, the online UC community is very active. Patient-to-patient support is one of the best ways to navigate living with UC. Making connections with others who know the ropes will help you to find your way and start to build your support network.
Below are some of the most helpful online resources for people living with UC.
A great starting point is to reach out to a nonprofit organization to learn more about getting involved with the UC community. By participating in their events and fundraisers, you can connect with others and help to spread the mission of the organization. Supporting a UC-based nonprofit can also provide a sense of belonging and purpose after a new diagnosis.
Here are some of my top picks for UC organizations:
- National Ulcerative Colitis Alliance (NUCA)
- Girls with Guts
- Intense Intestines Foundation (IIF)
- The Great Bowel Movement
- Crohn’s and Colitis Foundation
- IBD Support Foundation
Twitter is a great tool for people living with chronic conditions because it allows them to connect and support each other. Twitter chats happen in many time zones and on different days of the week, so there are many opportunities to chime in on great conversations.
The UC community is incredibly active on Twitter. One of the best ways to create relationships with others is to participate in a UC or inflammatory bowel disease (IBD) Twitter chat. To participate in one, log on to Twitter and search any of the below hashtags. This will allow you to view previous chats, with details as to who joined and the topics that were covered.
Here are some chats to check out:
One of the best ways to become a UC advocate is to participate in condition-specific awareness events. There are two well-known advocacy events for the IBD community: IBD Awareness Week and World IBD Day. People whose lives have been affected by an IBD join in these events to share their stories, educate the public, and promote positivity.
World IBD Day is particularly special because people from around the world unite to raise awareness by posting on social media and lighting up landmarks across the globe in purple. If you’re interested in becoming a UC advocate, the Crohn’s & Colitis Foundation offers a really helpful toolkit to get you started.
Online support groups
People living with UC can often find themselves isolated in their homes, unable to leave. This is why the community is very active in online support groups. These groups are great places to meet people with similar experiences. Members can share tips with each other on managing the condition.
There are groups for teens, parents, caregivers — anyone who could use someone to talk to. Facebook is a popular place to find support for UC. Some groups have over 20,000 members! There are also private online communities hosted by nonprofits. Only people living with UC are able to join these channels.
Some of my favorite support groups are:
- National Ulcerative Colitis Alliance (NUCA)
- Ulcerative Colitis Support Group
- Ulcerative Colitis
- iHaveUC Support Group
- Girls with Guts Private Forum
- Crohn’s & Colitis Community
- IBD Support Foundation (IBDSF) Online Community
Finding support for UC is easier now than ever. There are hundreds of patient blogs, online chats, and support groups to help people connect and learn from each other. With so many ways to connect with others in your position, you’ll never have to be alone, and that is very powerful!
Having UC is far from a walk in the park. But with the help of these resources, you can “get out there” and make new friends to support you on your journey.
Jackie Zimmerman is a digital marketing consultant who focuses on nonprofits and healthcare-related organizations. In a former life, she worked as a brand manager and communications specialist. But in 2018, she finally gave in and started working for herself at JackieZimmerman.co. Through her work on the site, she hopes to continue to work with great organizations and inspire patients. She began writing about living with multiple sclerosis (MS) and irritable bowel disease (IBD) shortly after her diagnosis as a way to connect with others. She never dreamed it would evolve into a career. Jackie has been working in advocacy for 12 years and has had the honor of representing the MS and IBD communities at various conferences, keynote speeches, and panel discussions. In her free time (what free time?!) she snuggles her two rescue pups and her husband Adam. She also plays roller derby.