No One Understood My Struggles With Crohn’s Disease

Written by DIANA-ASHLEY KRACH

I was in severe pain and lost 30 pounds, but people just assumed I was starving myself.

When I tell people I have Crohn’s disease, I usually get one of two reactions: a sympathetic expression that shows they have some grasp on what it is (or what they think it is), or blank expressions matched with a demand for a Wikipedia-like explanation of the disease. I have been known to tell people to “Google it,” but only after exhausting all of the easiest ways of explaining that this is an autoimmune disease, not just “stomach issues.”

Just before I was officially diagnosed with Crohn’s disease, I went through many different pharmaceutical treatments and visited every specialist short of a proctologist. I lost over 30 pounds in under three months, and my fellow hairstylists and some family members assumed this was the result of some fantastic diet, not the fact that my body had stopped digesting food altogether. My coworkers and my parents thought that I was making myself sick. My boss at the time accused me of not eating, because she never saw me consume food at work. The truth was, I was afraid of how my body would react to the food; my body was rejecting me, or at least that’s how it felt at the time. Everything was trial and error.

The trepidation has never really gone away, because Crohn’s still remains a mystery, medically speaking. Doctors remain unsure of the cause, and there is no cure for it. Crohn’s disease is an inflammatory bowel condition that attacks healthy cells in your GI tract, causing inflammation. Symptoms can include skin rashes and lesions, bone loss and arthritis, eye complications, and ulcers, to name a few. Each person is different, and flare-up triggers can be anything from food to changes in environment.

The biggest misconception about Crohn’s is that one treatment or diet will cure everyone. During the first year of diagnosis, I heard opinions from every client, coworker, or family member who knew about my condition. Opinions quickly turned to criticism, and not one aspect of my life was off-limits. Complete strangers told me what I should be eating, what I should be taking, while my body went through a roller coaster of side effects from a constant change in medication. Certain family members told me I was too young to be sick all the time and suggested I was responsible for my deep exhaustion and constant pain. I smiled weakly while I tried to stay upright, my body weak from lack of nutrition absorption, and nodded along politely.

I knew people were only trying to help with a condition that is confusing at best, but I couldn’t help but feel a little annoyed. When I sat in break rooms and listened to gossip, I heard how other stylists were considered lazy for calling out sick, so I tried to remain as stoic as possible about my misery. I can understand how difficult it is to believe someone is in so much pain that they can’t walk, when just yesterday you saw that person dancing around work. Unfortunately for those of us with Crohn’s disease, flare-ups can appear out of thin air, with absolutely no notice.

When these flare-ups occur, the symptoms intensify with a quick fierceness, usually the result of an infection (at least in my case). My first extended hospital stay, the one that resulted in a correct diagnosis, happened after my fever reached 106 degrees. The cramping was so bad that I could not stand up, and I was shaking uncontrollably. It took many tests and procedures to figure out that my symptoms were a result of Crohn’s. I was told I had Lupus, kidney disease, appendicitis, and ulcerative colitis first, and treated for nearly all of them.

My body rejected many of the medications, and I had no idea what to eat during this time of discovery. Many people told me that I was making myself sick, and in a way, they were correct. It took me spending the first few years of my marriage in a hospital to figure out that stress was my major trigger.

After my last hospital stay, I decided to cut unnecessary stress out of my life and resist my natural urge to overdo. I also learned that my quality of life depends on listening to my body, and no one else.

I had to learn the hard way what my body can handle, both physically and emotionally, so I no longer pay any mind to other people’s opinions.

Source: cosmopolitan.com

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