“I had been a relatively healthy kid my whole life. Aside from winter colds and the occasional fever or stomach bug, I never endured any life-threatening illness or traumatic event. My childhood had been typical, if not loving and joy-filled.
But slowly, or all at once, depending on whether you take my 12-year-old or adult perspective, a variety of symptoms started to manifest. I experienced gastrointestinal issues as well as joint pain in my knees and mouth sores on my gums. Suddenly food gave me belly aches and I felt too full to take more than a few bites.
While it was me living this it was my parents who were concerned. I had lost weight and they could see changes in me. Scarily enough a handful of medical professionals didn’t see the same abnormalities, or more likely, didn’t want to. It took at least six visits to my pediatrician’s office and a couple of months for my body to degrade further before one doctor believed I needed help. It took a short visit with a pediatric gastroenterologist for him to be convinced I had Crohn’s and needed medical attention right away. That’s where my story began.
Feeling relieved by the diagnosis was the first step in my new life with autoimmune disease, something that did not have a cure, but would be managed my whole life. I sat before my team of doctors taking in information about Crohn’s and learning things I did not what to learn. Learning this was a part of me from then on. Learning I would need to take a kind of responsibility for myself that other kids didn’t have to worry about.
That first year was adjusting to gaining weight back, educating my friends, informing my teachers, and weaning off of steroids. was blessed to have the most supportive friends, many of whom I am still close with today. My girlfriends were willing to stay in and watch a movie or give me space when I wasn’t feeling my best. Because my friends were ‘cool’ with it, that really helped smooth over the feeling of dealing with something that made me different Unfortunately, the steroids barely got me through one year until I found myself, 13 now, in the hospital to stabilize my 80 pound body. My parents, frustrated I followed ‘the rules’ and took my medication but was starting all over, pressed for other ways I could heal, specifically in my diet. They were met with shaking heads of the highly trained professionals that diagnosed me. They were told the diet changes out there were not scientifically-backed and very hard to follow, squashing that idea. My parents persevered and in a few months I had a life-changing meeting with the man who would become my main doctor, confidant, and life-saver. Practicing what most would call ‘holistic nutrition,’ or ‘alternative’ or ‘complementary’ medicine, his approach was very different than my doctors’ from the hospital. His philosophy was to get to the root cause of what was triggering me to flare up, which largely lied in what I was putting in my mouth.
If I thought the day of my diagnosis was life-shattering, this day would change the whole trajectory of how I lived my life. I was opened up to a new world that viewed food as medicine. As a child, it felt like the end of the world being told in order to heal I would stop eating a lot of my favorite foods. For a while I felt sad seeing people around me enjoy the foods I loved. I felt left out of eating ‘fun’ foods and this also made me feel angry I couldn’t eat like everyone else. What got me through this was supportive family and friends. My parents worked hard to find and make foods I enjoyed stocked in the house and kept very few foods around I could not eat so I was not tempted. My friends would seek out restaurants that had choices for me and we spent time together doing things that didn’t involve food. I felt more at ease because they didn’t make a big deal about it. Cutting out gluten and dairy were the hardest. It took time to get used to this new normal. I didn’t accept Crohn’s for several years and I held on to anger and grief deep down inside. Throughout the years small flares and the infamous fatigue that comes with being a ‘spoonie,’ (the term for someone with a chronic illness) have been scattered through. Sometimes my energy drains quickly and without rest it can escalate into more. There have been missed parties and more medical appointments and procedures than I would have liked to have attended. In 2018 I endured my most challenging year. Being 24 years old I should have been living a fun, lively social life. However, I developed an abscess that brought a lot of pain and fatigue and I missed so many outings with my friends like birthdays and New Year’s Eve. It really brought me down to be missing these times in my 20’s. Before I had surgery to resolve the issue, I had many times of feeling hopeless when I needed assistance simply getting out of bed or getting dressed because of the pain I was in.
My support has made all the difference. In fact, my friends stood by and made it clear they would just love me more through the ups and downs. My parents purged our house of most foods I couldn’t eat and joined my new diet so I wouldn’t feel so alone. Friends and family made sure I had ‘Alexa friendly’ options wherever we were eating. It made me feel loved instead of left out. My support system and food choices have allowed me to live a fairly ‘normal’ life, despite the rocky start I had’ and still have to this day.
Most recently in 2018-2019 I dealt with my first real complications. I had developed fistulas and an abscess that ended in my first surgery. I have bounced back from that and I will soldier on, like I always have.
I am so grateful for being in a very healthy time in my life now. I support my health by focusing on nutrient dense foods and supplementing with vitamins my body needs more of. But it’s more than food and supplements. I evaluate my stress levels and if I am getting enough sleep. I even check in to see if I am doing enough things that make me happy! These all contribute to the state of our wellbeing and I can feel the effects when one of them is off. Crohn’s disease has made me appreciate life in the sense that energy and vitality can come and go, so I cherish and use what I have now. I can walk. I can talk. I can taste, see, smell, touch. I can work and laugh. I am surrounded by love. During rough patches I just remind myself of all the things I have to be grateful for that outnumber Crohn’s disease. And that is why Crohn’s will never be the biggest part of my life.”
This story was submitted to Love What Matters by Alexa Federico of Boston, MA. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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