By Claudia Merandi.
Right around the time I was six years old, I started to get horrible stomach pains. My dad suffered with Crohn’s Disease and it was not uncommon to hear him cry when he was in the bathroom. I used to put my pillow over my head, so I could muffle out his cries.
My stomach would continue to worsen over the years and by the time I was in court reporting school, I would experience full-blown Crohn’s flare accompanied by painful obstructions. The stress of owning a court reporting agency and working as a reporter would bring on debilitating flares.
Right around my 30s, after I had both my children, I asked myself, “Where the hell did everybody go?” The only people I surrounded myself with were my daughters and my mom. All my friends disappeared. Eventually, my illness would rob me of my fiancé, my business, my career, and any connection I had to the outside world. The “healthy” people, as I would refer to them, all disappeared.
There were too many occasions when I would eat poorly, and without fail, I would get admitted to the hospital the next day. My doctors would tell me to watch my diet and I would say, “Oh, my Crohn’s is too bad; my diet has nothing to do with going in the hospital.” Or I would talk myself into believing that I’m just sick; stress or no stress, I’ll still be sick.
Before I knew it, I became a person with Crohn’s instead of a person living with Crohn’s. I started to identify as a sick person. “Oh, I can’t go because I’m too sick.” Or I would tell my then fiancé, “We can’t have sex because I ate today.” (Boy, I sure wish I could turn back the “sex” clock.”)
Who the hell would want to be around me? I started to hate myself. If I hated myself, why would anybody love me?
I was very private about my hospital stays and my depression. I associated depression and illness as a form of weakness. If I was depressed, I was weak; if I went in the hospital again, I convinced myself that I could have waited longer before I went in. It was the” mental emotional Crohn’s Disease cycle.”
When you grow up in an Italian household, you don’t complain much. And if you did, your mom would throw her slipper at your head.
But it becomes hard no to complain. I think any painful chronic illness tears you down physically, emotionally, and mentally. But I just got tired of living like that.
I woke one day, after spending too many days in bed, and I looked in the mirror and I said out loud, “This shit stops today.” I decided I was going to deliver Meals on Wheels.
My mom would tell me, “You have to help others in order to help yourself.” For some reason, that morning was the day I decided to transition into a healthier, happier Claudia.
I would pick up my meals at the meal distribution center. I would gag because they stunk. I took my daughters with me when I would deliver the meals. My people would wait at the door for me to arrive with their meals. My girls would put a smile on their face. Delivering those meals made me feel better than the people that were receiving them. I’ve always enjoyed working with the elderly, so I completed my training to become an advocate for the elderly. Between both volunteer positions, it started to give me back my confidence.
Prior to volunteering, I would avoid talking with the other moms or friends because I felt sad and I didn’t want to be a burden on others with my sadness. I was always the: “I’m fine, thank you for asking” girl.
I was a classically- trained vocalist and I was involved in theatre, so I had an intrinsic stage presence. I could feel some of my “stage presence happy” slowly starting to return.
My mom’s identical twin died in 2016 and I wanted to lift her spirits. I hated to see her so sad. She took care of me and my girls while I was in the hospital for 20 years and it was my turn to take care of her. So, I decided to enter a fitness competition and bring awareness to Crohn’s Disease. I knew the monumental task that was ahead of me: I had to stay healthy, train daily, and eat perfectly clean if I was going to wear a bikini and five-inch heels on stage.
There was one problem: I surrounded myself with some negative people. After my first weigh in, I decided all the negative, hateful people need to exit my life and that included family and friends.
There was this one girlfriend that was always negative, always talking badly about others, and seemed to thrive on gossip. After I would leave her, I would feel “fat with anger.” She was the first to go.
We’re Italian so I needed to maintain cooking large meals for my family. But no matter what I cooked, my willpower would prevail. When you diet, there’s people that try to sabotage your diet. You learn who they are quickly. But nobody could deter me from my goals. I was working too hard to let food destroy my gains.
Slowly, I started to retrain my mind into a positive lifestyle. Great things always start with something small and sometimes it’s those small changes that are the most effective.
Every morning, I would wake up at 4:30 a.m., make my girls’ their lunches, and I would pray the same prayer on the way to the gym: “God, give me the strength to diet strong, train strong, advocate strong.” That pray has never changed.
Now, I would still get sick and land in the hospital but I no longer self-loathed. I didn’t feel the guilt attached to the hospital stays. I had increased the frequency of my Remicade and I started on a small dose of daily opioids and that helped immensely with achieving remission. I still had the frequent bathroom trips; but instead of 40 daily, I was down to 15 daily. Instead of being admitted every 14 days, it was every four months. It was around that time I had decided to have my breast implants removed. I was desperate to find my way to “my” healthy.
Once I retrained my mind, I knew if something or someone caused me stress, it needed to be eliminated.
Now, my diet was clean, I’m training at the gym daily, my friends are positive, my faith is strong, so I started to live by the 4 Fs; “Faith, fitness, fortitude.” And if you don’t like it, you can F off. (that’s the fourth F.)
I started to go out more. I was no longer accompanied by a large shawl that only an elderly lady would wear. I loved who I was becoming. And I knew it was just going to get better.
But there’s one factor that you can’t get away from when you’re a person with Crohn’s and a patient advocate: COMPLAINING!!For me, complaining is wasted energy but it’s rampant in the pain community.
When I created the Don’t Punish Pain Rally movement, there were several obstacles that would stunt my “mental growth.” There’s a massive amount of negativity and complaining in the pain community. I needed to find a good place where I could be a presence, help effect change, but block the negativity. That’s where my lifestyle would be my saving grace. You see, when you create an amazing lifestyle, even with Crohn’s Disease, those negative forces can’t take you down.
Two days ago, we celebrated the second Don’t Punish Pain Protest. We organized 80 protests. My training never stopped but my diet definitely isn’t as clean as I would like it to be.
Many people believe dieting is difficult. It starts off as a diet but it leads into a lifestyle. Training daily, praying daily, eating clean, surrounding myself with good people, those are all pieces to being the best that I can be. But you must find the pieces to be the best that you can be.
Be good to your body. Be good to your soul. Be good to your illness.