The Mighty Logo

When Others Suggest You Are Too 'Pretty' to Be Sick With Chronic Illness

I didn’t understand or care about the concept of being pretty until I was about 10 and Max Humphreys told everyone in our fifth grade class that he thought I was hot. Before this I was more concerned with beating every boy in my school in an arm wrestle, getting 10 perfect back handsprings in a row, dying my tips hot pink, eating as many French fries I could in one sitting and contorting my face into the most disgusting expressions to hear my friends laugh.

Physical beauty wasn’t something that mattered to me until I realized that I possessed it, but more importantly, until people started focusing on it.

By the time I was in Jr. high school, with the exception of close family and friends, people seemed to care less about my ability to dominate any boy on the basketball court, the straight A’s on my report card and my quirky sense of my humor. Compliments and conversations began to revolve around my long blonde hair, how perky my boobs were, how plump my lips were or how lucky I was to have a six pack at just 13. Sometimes I thought my physical appearance made me some kind of liar. Everyone constantly told me how “pretty” I looked, but I was still the same weird girl who lived for farting competitions and slept with her mom when she had bad dreams…. or every other night for no apparent reason. When boys would pay me attention or If I started “dating” someone, my friends would laugh and say, “oh Katie, if they only knew what you were like behind closed doors.!”

In high school people continued to tell me that I was “gorgeous, stunning, looked like a model, skinny, perfect.” And to be honest, I liked the attention. I felt special. But what I also started to notice, was that the more people perceived me as “pretty,” the more “dumb” they thought I was. This confused me greatly, as my grades were pretty impeccable and I spent hours studying and perfecting assignments every night. The whole dumb blonde thing only really started to effect me when my basketball coach began to taunt me. During one game, when I incorrectly carried out a play, my coach asked me if my blonde hair was getting to my head and took me off the court. I ran into the locker room crying, feeling labeled and completely misunderstood. Ever since that day freshman year, I felt I had to prove to people that I was smart. My intellect undoubtably became my greatest insecurity and I would masterfully hide behind my looks for confidence and validation.

Fast forward four years later to my first year of college at the University of Texas. I rushed for a sorority two weeks before school started, so my priority as an incoming freshman was finding the perfect pairs of heels to match my new sundresses. After joining kappa kappa gamma, attending weekly mixers and date events, the focus on physical appearance continued. I was elected a sweetheart in several fraternities and loved every second of it. While my grades never suffered, I certainly cared much more about looking the part in my Greek bubble than playing the part as a motivated, dedicated and capable student ready to take on the world.

During junior year, I got really sick with an infectious colitis called C-diff. I almost died. But according to my GI doctor at the time, who did save my life, “you can never be too rich or too thin.”

I guess he was right, because when I returned back to school after surgery about 20 pounds lighter, all I got was compliments. Girls would say to me, “wow, how do I get that disease.” But it’s not all so black and white. Of course there were those who spent way too much time trying to spread rumors that I was anorexic, but for the most part people just continued to tell me how great I looked.

When I graduated college in 2014, I got significantly sicker. My colitis wreaked havoc on my my autonomic nervous system, causing me to develop a chronic illness called POTS along with severe gastrointestinal dysmotility. I became so ill I had to permanently quit working and was told I would be homebound and severely limited for my entire life.

But guess what!? It was really no big deal, because according to everyone around me, I still looked beautiful! “Katie, nobody would ever know you’re sick. You’re so pretty,” I was told over and over again. While my body wasted away in size over the years, the one thing that never changed was my face, so if I wore the right clothes, I could fool just about everybody.

After getting married to the love of my life, my health continued to deteriorate rapidly. My stomach and colon became so slow, we needed to explore more aggressive surgical options.

When I finally got an ileostomy bag, my friends and family challenged me to wear it proudly. I thought that my new mission was to show that you could still be “pretty” with a bag, hence my short-lived Instagram account hotostomygirl. But why did I still care so much? I had almost lost my life again post-surgery, yet the second I got out of the hospital I found myself at a hair salon in Soho getting my roots done, as I sat in excruciating pain with a catheter hanging out of my small intestine to help it drain into my bag.

For months, while my husband and I lived at my mom and her boyfriend’s home for support, visitors would come and go. During this time, my ostomy was having many complications, and I spent most hours of the day in the bathroom digging feces outside of my stomach with medical tools, as my small intestine was not properly outputting stool. But there were always those five minutes in between those crap digging sessions, where I would apply my mascara and two dabs of blush to make an appearance for my next visitor. And of course the first they would say was, “wow, you look great!”

But then something happened that was far more devastating for me than strutting a non-working ostomy bag at 28 and being on the brink of death. My perfectly symmetrical features and cheek bones started to fade away behind a swollen swollen moon face. I felt like Will Smith from Hitch when he had an allergic reaction and had to run to the pharmacy with Eva Mendez to chug a bottle of benadryl.

As the weeks went by, my tiny little body began to change. I had gained about 15 pounds of pure fat even though I was barely able to eat. I always viewed weight gain as a positive thing with my illness, but the way it was occurring was peculiar and didn’t look right. At the same time, my hair began to fall out, and I found my legs covered in bruises. I was devastated. And of course all anyone wanted to say was, “well you’re still pretty, your face just looks a little puffy! Just like you had a salty pizza and fries night!” I hadn’t eaten pizza and fries for about 10 years.

With my worsening gastrointestinal situation, I decided to not look in the mirror or weigh myself for a while, and just focus on getting strong for my revision surgery to correct my malfunctioning ostomy.

As the months passed by, my facial and body swelling began to go away and my hair slowly started to grow back. My surgery ended up working and I felt like I could finally go back to living my already shitty life, but not so shitty that I was dying and with a pretty face again!

Fast forward to COVID-19. I had worst intestinal obstruction of my life. This landed me at South Hampton hospital where they had no idea what to do with me. My family couldn’t be with me due to COVID protocols. When I was supposed to be heliported to my specialized hospital in NYC, the facility became COVID only. My husband, my mom and her boyfriend lived next to me on FaceTime for the duration of my stay, communicating with my doctors and nurses as I was too weak to do so myself.

When I was finally transported to Stonybrook Hospital to see a more experienced colorectal surgeon, the staff agreed to let my mother come say goodbye to me in case I were to die. I was preparing for my great departure. Cozied up in my stomach bile drenched hospital bed with “COVID code-blues” blasting on repeat over the intercoms, I tried to talk to my dead father and imagined I was in a nice warm cabin overlooking a beautiful mountainous landscape. I do remember a new night shift nurse coming in and saying, “oh you’re so pretty!”

But soon I opened my eyes and my mom was standing before me with my surgeon who was holding a variety of different sized catheters and ostomy irrigation supplies. My doctors had guided this surgeon on what to do over a FaceTime conference, and to everyone’s surprise, with my mom holding my hand, the blockage was cleared.

I returned home with my family. Unfortunately, my intestine did not want to wake up again yet. Just like I had previously done before my revision surgery, most of my day was spent on all fours sliding a catheter in and out of my intestine over a bucket. I ended up having to be fed through a vein that led to my heart for several weeks.

But what was getting to me the most? My face started to swell again and my Will Smith alter ego was coming back. Out of nowhere, I began having emotional outbursts and feeling very suicidal. My doctors blamed it on malnourishment and post-traumatic stress, which was a valid assumption. But the outbursts became so severe that I found myself throwing large objects at my husband, cussing out my mother and concocting plans to end my life.

Over time, the facial swelling worsened and the hair loss continued. I stepped on the scale. I had gained 15 pounds quickly, which only really started after I was taken off of my nutrition, so this concerned me. My breasts began to sag, my clothes no longer fit, and my body was covered in bruises again. I begged doctors to evaluate me. They brushed me off, insisting that weight gain was a positive thing and my body was trying to recalibrate. They thought I had an eating disorder and body dysmorphia, I could tell by the way they talked to me and had been down that road with doctors for years.

But the weight gain continued to sky rocket, my muscle integrity diminished greatly underneath the layers of fat that I was swimming underneath, my insomnia kicked in at full force, and I was so angry I could have huffed and puffed and blown a house down.

It wasn’t until I admitted myself to the hospital, which I don’t even do when I’m dying, that they began to test for an illness called Cushing’s disease. Because most Cushing’s patients become obese, they were still in denial that I had it and very reluctant to do the entire medical work up.

I had every single symptom, minus the large buffalo hump that grows between the shoulder blades. Cushing’s is often referred to as the “ugly disease.” It is caused by a benign tumor, usually on the pituitary gland of the brain or on the adrenal gland, that excretes excess amounts of cortisol. The cortisol causes the body to undergo rapid weight gain, facial swelling, mood swings, hair loss, easy bruising and many more undesirable symptoms that literally cause its victims to behave and look like prehistoric beasts.

Several months later, I finally found a doctor who could properly diagnose me with this horrific disease and run me through the appropriate tests without judgment, hesitation or ego.

So here I am, waiting for my final tests to come back and praying they remove the tumor found on my brain that is causing me to morph into someone who I no longer recognize as myself.

Perhaps my greatest struggle throughout this entire journey has been the loss of my physical self. I grieve the woman who I saw in front of the mirror every day. I miss her dearly. The funny part is that the first thing people can think to say to me now is “I’m sure you’re still beautiful!” Or “the weight will come off. You’re still gorgeous to me!” All I want to tell them to do is to shut up.

For my entire life I have been cursed with the blessing of being an attractive female and having people base their opinions of my character simply off of the way I looked. I got so warped into it, now I don’t even know who I am when I’m no longer am without my looks. Now that my physical beauty has been stripped away from me, I barely care to reacquaint myself with the person underneath my shell. So I wish everyone would do me a big FAT favor and stop commenting on the way I look. Stop telling me I’m still pretty. Let me for once in my life, surrender to it all, and accept the fact that I am not a striking specimen at the moment. And even if I still was, let’s focus on the fact that I’m a warrior and have somehow lived through years of illness and agony rather than the fact that I fit some antiquated stereotype of what it means to be gorgeous in today’s very broken world.

And when I say I’m ugly, don’t tell me I’m not. I’m allowed to feel ugly for once in my life. Maybe if I embrace it I’ll feel less like I died and more like there’s hope for a future. You telling me that I’m wrong makes me feel invalidated and as though being pretty is still the most important thing in the world. So until I get my brain tumor taken out, I’m owning the fact that I am not happy with the way I look and maybe that’s OK.

As we enter into a new year with much needed change, let’s start complementing growing girls on their accomplishments before their physical beauty. Let’s start making them feel prouder about the painting they made in art class, their winning goal in their soccer game, that 95 percent on a history paper, and the fundraising project than they do about their hair or new outfit. Let’s guide them toward being a changer and a shaker instead of just a babe and a head turner. Life is too short and when looks fade, it’s those who know themselves deeper than the surface who can’t lose sight of who they are.

Image via contributor

Conversations 51