You have such a great life."
"I’m so envious of everything you get to do."
"You are so thin – what is your exercise and eating routine."
"You must be able to eat whatever you want."
"Why aren’t you eating that? You are too skinny to be on a diet."
It’s time to get real. These are comments I hear frequently. Yes, through Instagram life seems perfect, but in actuality things aren’t so rosy or as wonderful as they seem.
So here we go with the most vulnerable I have ever been.
I am sick. I was born with a rare genetic disease called Hirschsprungs. This affects 1 in 5,000 babies and has a 1 to 4 girl to boy ratio. Hirschsprung Disease has varying degrees of severity but, to put it simply, I was born with a birth defect where I was missing nerve cells that cause the muscles in the bowels to move food through my digestive system. I was a newborn when my mom noticed my digestion process was irregular. Even though she was reassured multiple times by the doctors that I was okay, she disagreed and continued to push for answers. If she hadn’t been so persistent I would not have survived. My intestines could have ruptured causing death. When my parents took me to the hospital that first time, little did they know that this would be the first of many trips. At 6 weeks old I was diagnosed with Hirschsprung Disease. Between that initial diagnosis and my final surgery at 3 1/2, I had 9 surgeries and 13 hospitalizations. Surgeries, needles, colostomy bags, weeks in the hospital were how my family and I spent the first few years of my life. After it was all said and done, my entire colon and part of my small intestine had been removed. My final surgery did not mean my last time in the hospital, however. I have been admitted multiple times for dehydration and IV’s. I cry when I think of what my mom had to deal with. I am, in my godmother’s words, a miracle baby.
The reality of all of this is that I’ve never known anything different. Life with Hirschsprung Disease is my normal. Outwardly I look just the same as everyone else, beside the fact that my stomach is covered with scars that tell my story. Scars that I have been ashamed of from the moment I knew what scars were. As shallow as it seems, I’ve always been self-conscious of these marks and hidden them from even close friends. This is the first year that I have finally started to see the messy, still painful, staple and knife marks as badges of honor.
Here’s the truth I’ve finally admitted to myself. For years I thought that pretending I was just like everyone else meant that I was not letting my disease define me, but in actuality what I was doing was not accepting myself and my disease. I’m not the same as everyone else, never will be, and constantly forcing myself to navigate life operating at 100% is exhausting . Because I’ve never met anyone else with what I battle, I feel very isolated. In order to change that I need to be more transparent with my health struggles.
What is my daily life like? What are the repercussions of living with this disease? Honestly, I’m 31 years old and still discovering new issues. Eating normally, or eating at all, means a terrible stomachache. I don’t think I remember a day in my life when my stomach didn’t hurt. My body doesn’t digest the way normal bodies do, which often results in a swollen abdomen, pain, nausea and a lot of loud rumbles from my very talkative tummy. I am hungry and not hungry 24/7. I pressure myself to “eat like everyone else” when I’m out so that I don’t get any comments or questions, even though I know it sometimes means pain for days after. The foods that give me a stomachache; everything except pretzels. I’m tired from the second I wake up until I fall asleep as my body tries to keep up with my lifestyle. I get migraines from dehydration, which can also lead to the dreaded hospital visits and needles in the arm. I can’t absorb medicines, vitamins and nutrients the way a body should because my intestinal transit time is ridiculously faster than the average human. I can’t do a normal sit-up because my lower abs were compromised during the surgeries. My growth was stunted. I have to eat, no matter how sick I become, because I will lose weight faster than you can blink (which is NOT a good thing). My reproductive organs have been compromised and they don’t know the extent of the damage. Am I able to have children? Am I able to carry a healthy baby to term? They don’t know. When I go to a doctor and explain how I’m feeling and what my issues are, I am frequently met with blank stares and vague explanations because, the truth is, my body is my body and the issues I have can’t be diagnosed the way more common issues are. Isolation and defeat are prevalent in my life.
So now what? Am I writing all of this to tell you a sad story and get pity? No. I’m writing this (completely terrified) to become fully transparent. If I admit that I live with this pain and allow myself to accept it, then maybe I will be able to finally acknowledge my disease. If I admit this then maybe I will push past this barrier of “perfection” that I’ve battled my entire life. If I admit this then maybe my feelings of isolation will finally be gone. If I admit this then maybe it will touch even just one of you to share something that you have been struggling with, maybe you and I can feel less alone and less isolated in our pain and maybe that's where the real healing begins.