Olympic kayaker and La Jolla High School graduate Carrie Johnson has already made a name for herself worldwide, competing as a sprint kayaker in the 2004, 2008 and 2012 Olympics. Now that she has retired, Johnson is putting her celebrity status to good use as an advocate for Crohn’s disease awareness during Crohn’s and Colitis Awareness Week, which runs from Dec. 1-7.
Johnson is a participant in UCB, Inc.'s unique program, which focuses on putting a face to Crohn’s disease and to help sufferers realize that they’re not alone in dealing with the condition. As part of the effort, Johnson made a series of videos for UCB’s website and Facebook page, discussing everything about her life with Crohn’s disease from the initial diagnosis, to treatment, to how it has affected her everyday life.
Crohn’s is a chronic disorder that causes inflammation of the gastrointestinal tract. The condition affects more than 700,000 people in the United States and can cause extreme pain and discomfort. Many individuals who suffer from the condition are often embarrassed to discuss the disease and can experience anxiety about the condition in normal social situations.
Johnson was diagnosed with Crohn’s disease in 2003, while preparing to compete in the 2004 Olympics. The diagnosis brought relief and uncertainty, as Johnson was happy to know the name of her condition, yet unsure about how it would play a role in her life. Nearly 10 years after her diagnosis, Johnson has used her position as an Olympic athlete as a platform to spread the word about life with Crohn’s.
La Jolla Patch: What made you decide to be a representative for Crohn’s and Colitis Awareness Week?
Carrie Johnson: I think one of the big reasons for me personally is when I was diagnosed it was something that I had never heard of. I was diagnosed about six months after being sick and being bounced around to different doctors. It was nice to have a name on what I was dealing with, but then I had to go and do my own research. I came across worst case scenarios and statistics. I think that by talking about it, I can prevent someone else from going through that.
La Jolla Patch: How did you become involved with UCB’s awareness week?
Johnson: I wasn’t aware of any resources that I could go to for information so I looked on Google to see what came up. I also went on Amazon and purchased several books on the condition. Once I knew what [Crohn's] was, I personally never felt that it was something that I couldn’t talk about. So after I made the team in 2004, I was just open about it with the news media. It really was through that openness that some organizations actually approached me.
La Jolla Patch: How has Crohn’s disease affected your training and Olympic career?
Johnson: In 2003 it basically took me out of training and competing. There was about six months where I wasn’t really able to do much at all. It got to the point that I was so fatigued that I wasn’t able to physically do any of the work that I needed to. Coming back in 2004, once I started to go back into remission and build back into training, I think it actually helped me a little bit. I knew what it was like not to be able to train so I had an extra appreciation for just being able to do it, and I think that really helped me find some extra motivation.
La Jolla Patch: How has the disease affected your daily life?
Johnson: It really depends. That’s the most frustrating thing about the disease. There isn’t a whole lot known about what causes a flare up. I make sure that I don’t eat certain things that I know will upset my system. Right now I’ve been really good in that I’ve been in a strong remission for the past few months. It hasn’t affected my daily life very much. When it is flaring up, I need to be aware of where the bathrooms are at all times. Also, sometimes you just really don’t feel well and you can feel really tired. I think for me, the biggest thing is that you just have to stay positive and focus on the things that you can control. And you work on those.
La Jolla Patch: What do you get out of speaking about your condition?
Johnson: Once I started talking openly about Chrohn’s disease, I have been able to interact with other people who are living with the disease. I got to learn a lot about how other people are dealing with it and it gives me ideas, also. One of the big things about awareness week is to form a community and support network of the people who have Chrohn’s. When you can talk to someone who knows what’s going on and you don’t have to explain medications and procedures and symptoms, it’s just really nice.
La Jolla Patch: What do you hope people will take away from the awareness week?
Johnson: I really just hope that by sharing my story I can make another person feel comfortable to share their story. I’m hoping it can have a chain effect like that. If I can help one other person feel comfortable with living with Crohn’s then I’ll feel really good about what I’ve done.
La Jolla Patch: What would you tell someone who has just been diagnosed and is feeling uncertain?
Johnson: I would tell them that they’re not the only person who suffers from this and that you really can live with this disease. I think I would tell them one of the first things would be to find a doctor who they trust working with, and to find a support group of people who they can talk about it with. Whether it’s a support group, a family member, a friend - just one other person.
La Jolla Patch: What should non-sufferers know?
Johnson: It’s really important for people who have the disease to be aware of their treatment options, their options for finding support and I think that is also important for anyone who knows somebody who knows someone who is living with Crohn’s. They should learn about the disease and do their best to understand what that person may be going through and how they support that person. [Crohn’s and Colitis Awareness Week] really can be important to everyone.
La Jolla Patch: Do you participate in any other awareness programs?
Johnson: I haven’t worked specifically with other programs, but I am hoping that I can become more involved now that I’m not training and competing. I do have a Facebook page that I plan to focus on Crohn’s Awareness.