Barbara Doyle, Contributing Writer
When people ask me what the worst part of being sick is, I usually tell them it’s the symptoms. It isn’t a lie, but it isn’t the entire truth either.
It wasn’t until Thanksgiving break when I realized what the worst part of living with an incurable disease is. The worst part is dealing with something alone because there are people who can’t possibly understand what it’s truly like. That isn’t anybody’s fault, and I would never wish what I go through on another person anyway.
When I wrote my first article for this paper, my original intention was to be honest and open about my ulcerative colitis. I found that to be more difficult than I expected, because I am embarrassed about my disease and all the wonderful symptoms that come with it.
When you have ulcerative colitis, you’re fighting constant abdominal pain, exhaustion, extreme fatigue, muscle soreness, and you can barely keep anything in long enough for your body to absorb what it needs. You have to closely monitor your diet, give yourself enough time to get out of bed in the morning, and try your hardest to live a normal life.
My disease has no cure, but it does have treatments. There are many medications to help reduce or even stop the symptoms, but they might not always work or stick. I have moments where I feel great and moments when I feel like death warmed over.
This disease has taken so much from me. Over the summer, I had problems being able to keep food in, and lost over thirty pounds. I could see my bones. I could barely get out of bed from the exhaustion. I could barely gather enough energy to cook for myself. Living on my own, which is something I love, has become a huge obstacle.
Over Thanksgiving break, my UC flared up and gave me more problems. So instead of being able to relax and be with my family on Thanksgiving, I was stuck in a different room listening to everybody else laugh and enjoy themselves. All I could think about was how I was sick of being sick, and sick of having to fight something that I have no energy to fight.
It was over Thanksgiving break that I realized how much being alone can impact a person with a disease. I had to realize that there are going to be things I will miss because of illness, things I can’t be a part of, and things I have to sacrifice. I had to realize that I need to be strong, accept what it is, and let the medication do what it’s supposed to.
December 1-7 is Irritable Bowel Disease awareness week. Ulcerative colitis and Chron’s disease are two versions of IBDs. These are also “invisible” illnesses that may not be easily seen unless the disease itself has serious effects on our bodies.
My journey has not been easy, and I certainly wish I didn’t have to go through it. Even though my family can’t completely understand the things my body goes through that makes every day a struggle, it is their support that keeps me going.
So am I still embarrassed about my disease? Yes. People say that you should be open about your disease in order to help others understand, but explaining why your bowels are defective is not necessarily a pretty conversation.
All you need to understand is this: there are people that go through things that you may never fully grasp. People can see my hair falling out, my weight dropping, my pale skin, and my baggy eyes, but that doesn’t stop them from talking. Don’t judge people based on the little facts you have, or by what little you’re able to see. The fight we go through is more than most people can truly
understand.
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