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Against the Grain: I am me, I am not my disease

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Posted: Thursday, April 11, 2013 10:30 am | Updated: 2:39 pm, Fri Jun 20, 2014.

Hi. My name is Karen, and I am a…

Many times in our lives, we have been categorized – put into little boxes based on circumstances in our lives. We are identified by conditions or situations, whether it be our occupation, an illness like alcoholism or drug abuse, an abusive relationship, a physical or emotional handicap – we are labeled.

I remember being sick for most of my life. As a child, I had what my Grandma Governo referred to as my “sick headaches,” which I would in later years recognize as migraines. I didn’t eat that much, because I felt awful when I ate. When I was 27, I weighed only 84 pounds.

I knew something was wrong. I had seen doctors, told them my laundry list of symptoms: bone-weary exhaustion, migraines, intestinal cramping, diarrhea, bloating, mental fog – and those were just the highlights. My general practitioner recommended that I see a gastroenterologist, who diagnosed me with colitis. He wrote me a prescription for an anti-spasmodic for my colon, and put me on a daily dose of fiber. I continued on this regimen for 15 years, and it did nothing to alleviate my symptoms. My health continued to decline.

You don’t realize how quickly you become accustomed to adapting to a bad situation. Like a victim of abuse, you try to avoid certain situations that could put you at risk. As someone with a chronic intestinal issue, you make sure that you know where all the bathrooms are when you are going to be somewhere for more than 15 minutes. You gracefully decline social invitations to avoid embarrassing situations. You go to work because you have to, but you pray that the single-stall restroom is open so that you don’t impose your condition on your co-workers. You take copious notes, because your fuzzy brain can’t remember what was said in a meeting or what the person training you just told you about the new computer software.

By 2008, I was sick and tired of being sick and tired. It was time to take back control of my life. I decided to find a new gastroenterologist who would take my situation seriously. University Gastroenterology’s Dr. William Chen is my hero. During our initial consultation, I described my symptoms and told him that I couldn’t live like this any more. He agreed to start the diagnostic procedure, not relying on previous test results. Thank heaven I had good medical insurance, because there was a battery of testing, ending with an endoscopy. I’d had these tests before, but no one had done one simple test – the test for celiac disease. Dr. Chen almost didn’t perform the test either. He was ready to diagnose me with irritable bowel syndrome, but he asked me if I wanted to do one last test, although he didn’t think I had celiac disease since it was a relatively rare diagnosis. I remember our phone conversation. He told me that you could “knock him over with a feather” when he got the test results back. He told me that there is no cure for celiac disease, but that it is treated with a gluten-free diet. This diagnosis meant no bread, no pasta, no anything with wheat, rye, malt or barley. When I hung up the phone, I cried, but I also felt a sense of relief. I wasn’t crazy. My condition had a name: celiac disease.

Since 2008, I have had to learn to adapt to a gluten-free life. I’ve had to learn to look for hidden ingredients under unassuming names like maltodextrin, which is a chemical derivative of wheat. I’d learned how to avoid cross-contamination of my food, how to assure that I can eat safely in a restaurant and what vitamins and minerals I need to remain healthy. After only a few months of eating gluten-free, the mental fog started lifting. I wasn’t practically living in the bathroom anymore. No longer did my body feel like I’d been hit by a truck. I felt normal. After being sick for so many years, it was a strange feeling. When you have a long-term illness, you are so used to feeling awful that it becomes your new “normal.” Feeling healthier felt good.

I decided that I needed to educate myself. I found a support group, which has since disbanded. In February 2011, I decided to launch CeliacGirlRI, a blog dedicated to providing information, support and community to local people with celiac disease. The response has been overwhelming. Recently, Independent Newspapers gave me the opportunity to write this monthly column to share information on gluten-free issues and health. I am truly blessed to have these opportunities to share what I have learned. I take this responsibility seriously.

I am currently designing a website based on my blog for a multimedia design class at the University of Rhode Island. While discussing the project with my instructor, he made suggestions for my sitemap, which is the outline of the website. He readily admitted that he knows nothing about celiac disease, and then referred to someone who has to follow a gluten-free diet as a victim of celiac disease. He meant no offense, but I realized something. I’ve been attacked several times in my life, and I don’t go down without a fight. I am not a victim. I am not my disease. I am a survivor. I am a strong woman, who lives with a life-threatening condition. I am an advocate for gluten-free education and responsibility. I am a writer, a sister, a daughter, a friend.

Hi. My name is Karen, and I have celiac disease. I am not a victim. I am not my disease.

Karen Governo Ingraham, editorial assistant at Independent Newspapers, writes a blog to provide support and community for people with celiac disease and non-celiac gluten sensitivity. For more information, visit CeliacGirlRI.com.

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