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Talking about personal medical issues can be difficult. The idea of exposing your vulnerability can make anyone hesitant to open up. But there are a lot of benefits to allowing people into your personal journey with ulcerative colitis (UC).
I’m not writing to convince you to tell everyone you have UC. Yet I will say that acting as your own advocate and having a voice gives you one thing our disease doesn’t – control. What I mean is, I created opportunities to talk about my disease before others could. That way, I had control over when and how people discovered my diagnosis.
The more people I told, the more people I met with UC – and the bigger my support circle became. One day in particular, I took to Facebook and wrote about struggling with a flare and three, THREE, people in my small-town high school graduating class reached out to tell me they had a UC diagnosis too. I had no idea. Another moment that really moved me happened at the gym I belonged to. I walked in one day and a fellow member said, “Laura! I saw your blog,” then lifted up her shirt to show a scar on her abdomen. She had UC too. In one second, I went from feeling I barely knew her to an instant connection. We chatted about our stories and she pointed to another member of our gym who also has UC. Regardless of how much I talk to these people today, I know if I ever reached out to them for encouragement or advice, they would help without reservation.
Creates a greater acceptance of your disease. Telling others, even if it’s just a close family member, may help the diagnosis sink in. When you speak about it, it becomes real, and that can be quite liberating.
Promotes empathy and compassion. When you speak up about your individual experience with UC, you are allowing your support system to understand your needs.
Widens your support network. The more people who know, the more people who understand your individual needs. Explaining your UC journey can encourage positive support within the community.
Presents opportunities for education. There are many misconceptions about living with UC. Speaking up can help educate others about life with UC. Having these conversations can even help you learn about new ways to cope, which may help you better manage your UC.
Helps identify the roles of your friends and family. Some people close to you may handle the needs of your disease better than others. Talking about your UC with friends and family can identify which relationships may help or hinder your life when you’re in a flare or in remission.
Inspires others who are silent about their journey with UC. Last but not least! Your story may help inspire someone who is quiet or ashamed. Your voice may encourage others to speak up, make connections, teach, advocate, and help others feel like they are not alone. These benefits are endless, but some patients may still be hesitant to bring up the subject.
Can you practice a quick elevator speech – a sentence or two briefly explaining your UC?
How much do you want this person to know?
Are you willing to answer their questions?
Why is it important to tell this person?
The answers may provide good insight as to whether or not you should disclose (or how much to disclose) about your UC. There is no specific amount of people you need to tell. There is no amount of information you should disclose. You can control the conversation because it’s about you. So start whenever and however you feel makes sense for you.
Check out helpful articles, videos,
and tips about living with UC.
Pfizer is working with adults living with UC and medical professionals to bring you informative content. Register and be the first to know when new content is available on TalkingUC.com.
The UC Narrative patient survey was conducted online and via telephonei by Harris Poll on behalf of Pfizer between August 23, 2017, and February 9, 2018, among 2,100 adults ages 18+ residing in Australia (215), Canada (215), Finland (105), France (169), Germany (210), Italy (210), Japan (210), Spain (214), the United Kingdom (251), and the United States (301) who have been diagnosed with ulcerative colitis (UC), have had an endoscopic procedure to confirm their diagnosis, have not had a colectomy, have been to a gastroenterologist or internist’s officeii in the past 12 months, have ever taken a prescription medication for their UC (excluding those who have only ever taken 5-ASAs), and provided informed consent to complete the research. Raw data were not weighted at the individual country level, and are therefore only representative of the individuals who completed the survey.
The primary goal of the survey was to characterize the experiences of UC patients who are believed to be living with moderate to severe disease or those who may be living with poorly controlled disease. The choice to focus on these patient types was based on the assumption that these groups (versus those with milder disease) were more likely in need of support and resources, which the survey could help better identify.
To achieve the goal of focusing on those with moderate to severe disease, self-reported medication history was used as a proxy for disease severity. Patients with “moderate to severe” disease were defined as those who have ever taken a biologic or immunosuppressant for their UC, or have taken steroids for four or more of the past 12 months. Patients with a “milder” form of the disease were defined as those who have never taken a biologic or immunosuppressant, and those who have taken steroids for three or fewer months of the past 12 months. The research excluded patients who have never taken a prescription medication for their UC or have only ever taken a 5-ASA to control their UC. More than 80 percent of total completes were from patients whose disease was classified as “moderate to severe,” using this definition, with “milder” patients capped at no more than 20 percent of total survey completes. Results from the UC Narrative patient sample survey may not reflect the experiences of the broader UC population.
The UC Narrative physician survey was conducted online and via telephonei by Harris Poll on behalf of Pfizer between August 23 and February 9, 2018, among 1,254 adults ages 18+ residing in Australia (90), Canada (80), Finland (17), France (154), Germany (152), Italy (157), Japan (151), Spain (151), the United Kingdom (153), and the United States (149)iii who practice as a gastroenterologist, internist with a gastroenterology focus, gastroenterology internist, or gastroenterology surgeon,iv do not primarily practice in a long-term care facility or hospice setting, see at least 10 patients with UC each month (or a minimum of five patients with UC per month in Japan), with at least 10 percent of these patients currently taking a biologic medicine for their UC (physicians were asked to think about their experiences treating patients in their practice whose UC is moderate to severe throughout the survey), and provided informed consent to complete the research. Physician results in the United States were weighted by region, years in practice, and physician gender. In all other countries, physician results were weighted by age and gender to ensure alignment with the actual proportions in the population of gastroenterologists in each country.v UC Narrative physician sample survey may not necessarily reflect the experiences of all gastroenterologists.
For both patient and physician data, for the global, 10-country total, a post-weight was applied to adjust for the relative size of each country’s adult population within the total adult population across all countries surveyed. The unweighted sample sizes reflect the total number of patients and physicians who completed the survey in each country, while all reported percentages are calculated based on the weighted global total described here. Proportionate weighting for combining multicountry data into a single total is a common practice because it relies on externally recognized population data to achieve a global total that more accurately represents the real-world relative to the adult populations surveyed. There are limitations to this approach; when countries surveyed have widely varying population totals, the data from smaller countries may get weighted down within the total, thus reducing their share of voice when grouped together with the larger countries.
In the United States, the research method and survey questionnaires were reviewed and received institutional review board (IRB) approval from WIRB-Copernicus Group.
Language referencing data of those who agree with the statement, includes those who indicated both "strongly agree" or "somewhat agree" within the survey.
