I recently discovered the website, celebrating uc success where I read about Joshua Reineke who is doing remarkable things — while living with a chronic illness, ulcerative colitis (UC) . I wrote Josh and asked him if I could interview him so you could hear his story.
By the way, Josh is a graduate student at Brown who is finishing his dissertation (delivering it on 4.11) and he found the time to write this. That’s commitment to the cause, I’d say.
RJ: Josh, when were you first diagnosed and how old were you?
JR: I was diagnosed in September 2005 at the age of 25. I had been symptomatic for nearly a year before receiving the correct diagnosis. During that year I visited many doctors to discuss my symptoms, which were always diagnosed as runner’s diarrhea. At the time I was engaged in intensive triathlon training and I noticed that my symptoms worsened with running which was consistent with their diagnosis. However, I had always been very active and I felt that something else was going on with my body. It was not until I insisted on a referral to a gastroenterologist that I was diagnosed with UC.
In a sense the diagnosis was a relief because I could then face my condition with a knowledge of what was occurring.
RJ: How did this disease affect your ability to go to school, do your school work (through undergraduate school) and in general, live what would be considered a “normal” life?
JR: When I was diagnosed I was married, the father of a 9 month-old girl, a graduate student and was a competitive triathlete. Initially, all aspects of my life took a big hit. I was not able to take an active role as a husband and father, my training became erratic and I frequently missed days at work, which put my research behind schedule. This was a rough period in my life, so, with help and support from my wife, I made a commitment to face the challenges of UC.
I began to gain control of my disease by regularly taking my medications, restricting my diet to “safe” foods and reducing stress. Since then my UC diagnosis has provided an extra motivation to enjoy my active lifestyle doing activities with my family, traveling and training for triathlons.
On the whole I live a “normal” life, but considerations regarding my UC are always in my mind and there are the occasional bad days. I found that by not stressing or worrying over too many of the potential problems, my condition actually improved. Keeping a positive attitude so that my life is not defined by UC has been helpful in facing UC as just a challenge.
UC is a debilitating disease, but I have heard many inspiring stories over the past year that have motivated me and given me further confidence to live a normal life. This is a goal of the Celebrating UC Success program co-sponsored by the CCFA (Crohn’s and Colitis Foundation of America) and Proctor and Gamble Pharmaceuticals. Hearing others’ stories of overcoming the challenges of UC is helpful, particularly for somebody going through a flare or in the scary weeks after diagnosis.
It can feel like a return to a normal life is not possible during those times, but with confidence, support and encouragement you can return to a normal life. It is important for UC patients to know that.
RJ: Do you notice that your attitude about living with disease has changed over the years and, if so, how?
JR: It has only been 3 1/2 years since I have been diagnosed and I would say there has only been one shift in attitude. When first diagnosed I was ashamed of the condition and did not want others to know about it. This has changed as I have found discussing it and letting others know has reduced my stress and improved my condition. This has made my outlook much more positive.
RJ: Can you share any significant or “life shaping” experiences you’ve had regarding other people’s (particularly bosses, teachers, mentors) response to you and your illness? (e.g. have you found that others have tried to tell you that there are things you shouldn’t do – or to limit you ? Or that their belief in you affected you?)
JR: There was a very significant moment that caused a complete change in my outlook. About one month after I was diagnosed my sister-in-law was getting married. My wife, Noi, is very close with her sister and this was a very exciting time for her as well. While I had been diagnosed a month earlier, I had not told anybody (beside Noi of course) of my condition and with the medications I had began I was generally feeling ok.
The rehearsal dinner was the night before the wedding and my wife was really looking forward to spending the evening and night with her sister before her wedding. During the rehearsal dinner I began to feel very sick and as the evening went on I was reduced to a ball on the floor in intense pain and shaking with chills.
My wife took me to the hospital that night instead of spending that “once in a lifetime” night with her sister. It still pains me today that I took that away from her. To make it worse, nobody understood what was going on (since nobody knew I was recently diagnosed with UC) creating a little un-necessary drama.
Fortunately, I was feeling much better for the wedding day. I did not want UC to interrupt my life, or others’ lives, in that way again. It was then that I made a commitment understand my UC and how to take control of it. Additionally, the circumstance forced me to speak about UC; in some cases with complete strangers.
It was not as hard to speak about as I thought it would be and I no longer had the stress of what people would think of me if I ran off to the nearest restroom. It was no longer something unexpected or something to stress over. This leads me to another great aspect of the Celebrating UC Success contest. I mentioned earlier that it was helpful for UC patients to hear UC success stories, but it is also helpful for UC patients to tell their story.
RJ: I’m interested in your experience talking about this. I’ve created a Guidebook called Are You Talking? about how to talk with people about illness symptoms.
Do you think that having a chronic illness at a young age made it easier or more difficult to make good decisions regarding a career?
JR: I actually consider that I was not that young to be diagnosed of a chronic illness relative to others that I have met with IBD. I cannot imagine the challenges of having UC while in high school. I am inspired by the courage of so many kids with IBD. However, a friend who was diagnosed at a young age told me that he could not imagine being diagnosed in your 20s and having it “turn your world upside down.”
For me, it was not much of a factor in deciding my career. There are so many other factors involved in a career choice. For me it was about finding what I am passionate about and enjoy. Then determining how to best manage UC for the particulars of that career was the second step.
RJ: You’re currently in graduate school. How did having a chronic illness affect your career choice?
JR: I was diagnosed while in graduate school, but I recently was on the job market and accepted a faculty position. My UC did not have much of an impact in deciding my career track (academia v. industry), but I certainly recognized some of the advantages and disadvantages of each pertaining to UC.
If any of your readers who are interested in learning more about the Celebrating UC Success contest should visit the program’s web page.
Thank you for sharing my story with your readers.
Rosalind’s note: I was diagnosed with UC when I was 40 years old after living with MS for 12 years. It was a devastating disease for me – high fevers, no bowel control, hospitalizations and blood infusions. I stopped working for a living – for two years. My sick colon was removed 5 grueling years later – and I’m living with an ileostomy (given the MS damage, I didn’t want to worry about my bowel control any more). I was glad that I was already married and my life was established — I thought it made it easier to deal with the horrible effects this illness had on me.
(NOTE: For anyone newly diagnosed, UC “hits” people differently – as do all diseases. We have to remember this — as we also recognize the shared experiences. )
Here’s my question to you, dear reader: What was going in your life when you were diagnosed (or realized you have a chronic illness) and what about that particular time of your life made it easier or more difficult?
Rosalind aka cicoach.com