A week and a half before my 7th birthday, my grandpa died. I’ve never known my dad so the only father figure I ever had left me suddenly. I was devastated. I remember being so distraught at the funeral. Crying hysterically. Upsetting my grandma and everyone else to the point that they had my cousin take me to the bathroom. We sat there, for what seemed like forever, while I sobbed uncontrollably. I was never the same after that day.
Not long after, I started to not feel well. My stomach hurt all the time. I always felt like I was going to throw up or suddenly needed to go to the bathroom. I was so tired. My whole body hurt for no reason. My mother and I finished out the school year and then moved back to my hometown to live with my grandma.
Everyone around me was so sad. I didn’t want to say anything about being sick and make them sadder. Even when the blood started coming out, I didn’t tell anyone. I was so scared. Ashamed and terrified I had done something to cause this. For a year, I suffered in silence.
One day at school, I was feeling particularly horrible. I was bleeding a lot and felt panicked. I decided to tell my friend that I bled when I went to the bathroom. She didn’t know what to say, of course. That’s such a heavy thing to put on someone, anyone, but especially a child. Finally, she said that I had to tell my mom.
So, one day, I worked up the courage, walked into the living room where my mom was watching TV and said, “I bleed when I poop.” She sat silently for a minute, just looking at me. Then she said, “I’ll make an appointment with the doctor.” She turned her head and went back to watching her show… without asking me any questions or even trying to comfort me. I stood there for a second, waiting to see if there would be more. When it was clear there wouldn’t be, I went back to my room and shut the door.
I felt so alone. I didn’t know that that day was nothing compared to the pain and loneliness that was to come. After that day, my childhood became a blur of doctors, needles, pills, hospitals, terror, rage, anxiety and despair. Every day seemed worse than the one before. I used to sit on the toilet, crying, for hours on end. Horrified every single time to see the blood.
I didn’t have anyone to talk to about how I felt. About how sad and scared I was. When I would try to talk to my family, they would tell me to stop making myself sicker by being upset. I didn’t know what to say to my friends so I learned to push everything down. To keep my feelings to myself. Well, the feelings that I felt made me weak, anyway. I definitely didn’t hesitate to unleash my wrath on anyone and everyone for everything and nothing.
I resented my mom for a long time. I felt she was never there for me in the ways I needed someone to be there for me. I felt like she made an already difficult situation so much worse for me. But looking back, she just didn’t know what to do or say. No one did. It was scary for us all. As I’ve gotten older, it’s become clear that my family’s strong suit has never been communication. They weren’t taught how to comfort and communicate negative feelings in a healthy way.
Over the years, I’ve learned to release that pent up resentment and have compassion for the fact that we are all just imperfect humans trying to figure out how to avoid being in constant pain so our lives don’t become a tragedy. But in life, pain and tragedy are unavoidable.
If Crohn’s disease has taught me anything, it’s taught me that surviving, and even thriving, through pain is possible. I’ve proven that to myself time and time again. I won’t be defined by this illness. My life won’t be limited by this disease. I decide who I am and what I am capable of accomplishing.
I’ve been off medication since 2004 and have gone on to achieve many things I wanted in life. A BS in animal biology and a MS in environmental policy and management. Two yoga teaching certifications. Traveling and living abroad alone. Building a life I love. So many things that I once thought I would never be able to accomplish. Things many people told me I was too sick to do.
There needs to be a more open dialogue about “invisible illnesses” and how they impact us psychologically, as well as physically. And how our loved ones and our relationships are also impacted. We all need support in life. Someone to talk to without the fear of judgment.
If you have IBD and are looking for a supportive community, join my Facebook group LIVING WITH IBD!