Coping with chronic illness is a difficult process. It can be especially challenging for ulcerative colitis patients because it involves potentially embarrassing issues that are difficult to talk about. As a result, it is common to feel lonely and isolated. But rest assured, you are not alone.
It’s important to realize that there are many people who have experienced what you are going through, and are living with the same challenges as you are. In fact, there are more than half a million ulcerative colitis patients in the US and many more worldwide. Gaining the support of those who share your difficulties and learning from their experience can be a great help in coping with your illness.
Another common challenge is figuring out how to share your needs and concerns with others around you. Considering the difficult subject matter, you may be concerned how loved ones will respond to the news, if co-workers will be accepting and accommodating, and whether people around you will be able to understand and help you in ways that feel comfortable. These are all very common concerns for both new and seasoned patients. It can be tempting to keep it all inside and not tell anyone, but your life can be much easier with the support of people around you. Sharing at least some of your story with others is likely to be quite important, because in all likelihood you’re going to need their help at times.
So how do we find people who have similar experiences? How do we inform and include others around us to make our lives easier? The following suggestions have been helpful to a great many ulcerative colitis patients. Try to use some items on this list to begin making connections. As you start sharing your story you will likely find that the benefits outweigh the other concerns. In other words, it should get easier with practice.
- One of the best ways to meet other patients and learn from their experience is to attend support group meetings. The Crohn’s & Colitis Foundation of America (CCFA) sponsors more than 300 support groups nationwide. They have trained facilitators who ensure that it’s a safe and welcoming environment for all who would like to attend. You can share as little or as much as you’re comfortable with—or you don’t have to say anything at all, you can just go and listen if you like. To get started, find a support group near you.
- The CCFA also hosts education events, a toll free information line, an online community, a college student forum, summer camps for children, and a host of other patient support services.
- There are many patient-oriented web sites that focus on connecting patients with each other. You can ask questions, share your story, and read feedback and stories from other patients like you. Searching for colitis forum, colitis community or similar phrases will provide some good links. Facebook and twitter have quite a few patient-oriented resources as well.
- Visit Healthline’s Crohn’s & Colitis Corner for regular posts on coping skills and other interesting topics.
- Check with your doctor about other local resources as well. And of course, if you find some that your doctor doesn’t know about, please pass on the word.
- Another effective (and fun) way to meet people in your colitis community, and help make a difference in the process, is to join a fundraising event like a walk, bicycle ride or half-marathon program. There are many events all over the country, so there’s probably one near you.
- Seeing a therapist can also be a great way to learn new coping tools and understand yourself and your relationship with your illness. There’s no shame in asking for professional help. After all, we do it all the time with all kinds of things, so why not with this critical concern? Try to find one with experience in helping patients cope with chronic illness.
- Your loved ones are likely the best supporters around. Open up to them. Be clear and honest about how you feel and what you need. Understand and appreciate the sacrifices others make on your behalf. Communicate as effectively as you can, as this is probably the most important part of negotiating the challenge with friends and family.
- Remember that your conditions, symptoms, and needs will evolve over time, so you and your caretakers will need to adapt along with them.