Why It's Easier to Hide My Chronic Illness Than Say How I Really Feel
I was 25 years old, about to get married, under the normal stress and excitement any new soon-to-be bride would be going through, so I didn’t think too much of it when I started getting what I thought was a nervous stomach. I suffered from terrible abdominal pains my whole life that people told me were caused by worrying too much. It sometimes would have me doubled over in pain, unable to walk or get out of a fetal position on the couch, but it would always resolve and I could get on with my life like it never happened.
This time was different. I developed very painful abdominal cramps, fevers, nausea, dizziness, and eventually bloody bowel movements that were incredibly painful and scary. I hid this from almost everyone, not just because of embarrassment of the subject material, but I didn’t want to ruin our wedding, and all our family and friends’ plans to come who’d booked rooms and were traveling thousands of miles to attend. So I stopped eating, which did not stop the bloody diarrhea and pain, but made it slightly easier to hide it from my friends and family.
Inside I thought I was dying, and I felt like I was, but on the outside I was able to fake a smile, pretend I was just having wedding jitters and pretend I was just under the weather and needing rest. But what I was doing during those times of rest was spending days and nights in the bathroom with terribly painful bowel movements, taking warm baths to ease the incredibly painful spasms and abdominal cramping, and basically leaving a pillow on the bathroom floor because I knew I’d get more sleep there in between episodes than I would if I tried to make it back to bed.
I obviously could not hide this from my now-husband. He tried to comfort me as best he could, but he looked terrified and confided in his friend who was a doctor and asked what he should do. I would not go to the doctor, since I had no insurance and was terrified to go. On my actual wedding day I hadn’t eaten for days, I was incredibly sick and in so much pain, but I had my entire family there helping me get ready, thinking I was just sick with the flu and nervous. I couldn’t wait for what was supposed to be the best day of my life to be over, but I managed to get through. It was exhausting faking a smile, explaining why they hardly saw me after the ceremony, why I couldn’t dance or party afterwards. But nobody knew how bad it was. People told me I looked great and that I was glowing.
This was the start of my new life. Eventually the seriousness of my illness was out in the open as I ended up hospitalized and diagnosed with ulcerative colitis, and almost needed emergency surgery to remove my large intestine. I did not want to go through with the surgery, so against the surgeon’s advice, I was instead put on high dose steroids and immune-suppressing drugs that gave me minimal relief over the years.
For the most part I was able to play the part of almost-normal. I didn’t go out much, but when I did manage to be around people, I was always told how great I looked, how I always had a smile and such a great attitude and I just don’t look sick at all and must being doing great. Nobody really knew at all what I was going through, so when I ended up in the hospital time and time again, needing blood transfusions, fluids, IV meds and pain relief, it always surprised people. Even in the hospital I managed to put on a smile, brush my hair before I had visitors, and count the seconds for them to leave so I could just be sick in peace.
It was and is exhausting faking being well, but for me, it is far easier having people happy and more comfortable around me than seeing the looks of disappointment, fear, sadness, or feeling the need to have some sort of solution or advice on my health.
Eventually I had gotten so sick that I couldn’t even fake being well. But instead of faking, I just isolated myself so I didn’t have to explain how I could be so sick again, or see those worried or disappointed faces. I eventually ended up getting my large intestine and rectum removed, as the constant bleeding and diarrhea made me extremely ill. It was a very difficult recovery, and unfortunately years later I now suffer terribly with Crohn’s disease, which can affect the entire digestive tract.
More than ever I try to hide how I really feel because after surgery people thought I was better forever and I felt like I disappointed people by getting so sick again. When you say you feel great or better, people are so happy. You get the opposite reaction when you keep having to say you’re sick. I haven’t allowed visitors while in the hospital lately, so when people see me once I’m out, they can’t believe I was ever there or even that sick. “Oh, I heard you were just in the hospital, but you look great.” I usually just say thanks or change the subject; I think saying I was just in kidney failure and I’m still bleeding internally with a terrible infection would not be the best conversation piece while picking up the kids from school.
Sometimes I wish people just knew how my life really was so they knew where I was coming from — so they knew I was exhausted and can’t make that mommy’s night out because I didn’t sleep the night before as I spent it in terrible pain in the bathtub, or that I’m making short conversation because I’m barely able to stand and talk because I’m so dizzy from dehydration and malnutrition. But often when I actually really say how I’m feeling, it’s met with a negative reaction, sadness, fear, or even frustration towards me about allowing myself to get negative. I feel like it brings people down, and then that brings me down even more.
When I fake it, people still smile, I’m not having to explain myself, and it’s overall just easier than having to admit how I really feel. I just want people to understand, not feel bad for me or feel the need to give me advice on how I should feel or how I can make myself healthier. Just to understand why I live my life the way I do.
I consider myself lucky though, because when I go home to that man I married all those years ago, on a day that though so sick, was truly the best day of my life, I don’t have to fake being well or feel ashamed and embarrassed about being sick. I can just, without any explanation, be me.
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